Hidden disability

Episode 22, 15 August 2019

Many of the challenges that people face after stroke, including fatigue, memory loss, even speech difficulties, aren’t visible to those around them. In this podcast, we talk about the impact of invisible and hidden disabilities, how to make others understand and some things you can do to live well while dealing with them.
 
We speak to stroke survivor and StrokeSafe Ambassador Toni Arfaras, psychologist and researcher Professor Ian Kneebone, and social worker Siobhan McGinniss from StrokeLine.

 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.

The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your healthcare professionals.

You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat and beat stroke.

Chris: [00:33] Many of the challenges that people face after stroke are not visible to those around them. So issues like fatigue, memory loss, even speech difficulties, aren't immediately apparent. And this makes it hard for others to understand what stroke survivors are going through, and it can be a barrier to stroke survivors getting the support they need.

In this podcast, we're going to talk about the impact of invisible and hidden disabilities, how to make others understand, and some things you can do to live well while dealing with them. We'll speak to a psychologist and researcher Professor Ian Kneebone, and to social worker Siobhan McGinniss from StrokeLine.

But first, we have with us stroke survivor Toni Arfaras. Toni is a former primary school teacher who now continues to educate as a StrokeSafe Ambassador, as which she speaks to community groups and workplaces on recognising the signs and preventing strokes.

Toni, thanks for joining us today.

Toni: Thank you for having me.

Chris: [01:31] Now, our first question will be no surprise to anyone who's listened to this podcast before. Could you just quickly tell us your stroke story?

Toni: Okay. Back in 2013, September, I was down at my holiday house, got up to feed the dog and went to the toilet. And after I've washed my hands, I've gone to walk out of the bathroom and fell to the side of the room. That was all I had, was just that I fell and I had this sense of looking down on myself. Because there were stairs nearby, I called for my husband to help me get back to bed. So then he did and I went back to bed, felt a little bit sick, but nothing major and had the tiniest of headaches. We were actually meant to be spending that day painting our garage. But I just slept the whole day. And all I could say is that I felt like my head was too heavy for my neck. And my husband thought I just was trying to get out of painting, but I wasn't.

So, like I said, I spent the day pretty well sleeping all day, and no other real symptoms that I can describe, apart from a feeling of just not feeling right. The next day, I drove home because I suffered from severe motion sickness. So I thought rather than acerbating that feeling, I would drive and do that, so I did. On the Friday I saw an osteopath and explained what had happened, and I'd had that osteopath appointment booked for the previous month. She did basic neurological tests and said, "Look, everything seems fine. I'll just do a gentle treatment and let's see how you go." So she did that. I actually felt a little bit better, but she said, "If you feel worse, don't get better, then go and see your GP."

On the Sunday, so between the Friday and the Sunday, I still was just incredibly tired, just wanting to sleep all the time. On the Sunday, my husband said, "I think I should take you to the emergency department." I said, "Don't be stupid. It's only for emergencies. You know? So I'll go and see the doctor tomorrow if I'm no better." On the Monday I went and saw my GP, they did the same tests that the osteo had done, but I actually had lost some sensation in my face and arm, and also had got some weakness down my left hand side.

So they rang round to get me into an MRI as soon as they could. That was for the next day. So I went and did the MRI and a CT scan, went back to my doctor's on the Wednesday to get the results. And I've walked in and she just said, "I'm so sorry, you've had a stroke." That was the start.

Chris: [03:53] Yeah, okay. We're here to talk about invisible or hidden disabilities. Can you tell us a bit about what you experienced in terms of that?

Toni: Okay, so I suffer a lot, like I've mentioned, with fatigue, but also, it's affected my, as you said, I was a primary school teacher, but it has affected my maths, my spelling... I can no longer read books. I just can't follow stories or anything like that. And I was a really big reader beforehand. Decision making is a really big thing, my emotions, and that goes hand in hand with the decision making. Then sensory overload is a major factor. So whilst I present now as, people would not know that anything is wrong, I live near Fountain Gate Shopping Centre, so that's where I go to do my grocery shopping, and after about an hour I actually lose the ability to walk and talk properly, and I suffer from left side neglect. So I actually lose my vision in my left hand side, and my husband has to walk on that side, otherwise I'll start bumping into people or things that I just aren't aware of that are there.

Chris: [05:06] Yeah. Well, thank you very much for braving the crowds to come into the city today to record. In one of your blogs on EnableMe, because you are a frequent visitor on EnableMe, you said that "disability is not a competition." How well do you think people understand what it means to have hidden disabilities and what you're going through?

Toni: Look, people don't understand unless they've actually seen me when I'm affected. And I think in a way that's understandable, because how can you know about something if you haven't been educated about it, or you haven't got that visual stimulus to see what's going on? But once I start getting affected, it actually starts affecting my speech and things that. So then they do realise, but it's the trying to get people to understand. My day has to be planned around, like I plan for a few days in advance as to what I'm doing. And so sometimes I'll have to say to people, "Look, I can't do this because I'm going to be tired from that." They're like, "What a load of rubbish, they just don't want to come. They're trying to make an excuse, sort of thing." So there's that side of it, which can be a bit hard to deal with because you get some funny looks for it.

Chris: [06:17] Yeah. But I imagine you are quite a good communicator, because as I said, you have a teaching background, you do a lot of speaking as a StrokeSafe Ambassador. Do you think it's possible to explain this to people to get the message across of what a hidden disability is like?

Toni: I think so. I think I've been doing a good job. Every opportunity that I get, I do take advantage of. So even, for example, I've recently come back from a holiday from the Northern Territory, and so flying really affects me, so I can walk on the plane and I'm perfectly fine. And as soon as other people start walking on the plane and then the plane takes off, again I need assistance with walking and talking. I actually need wheelchairs to get off the plane, and everything. So with this trip to the Northern Territory, I've always asked for special consideration, the special assistance on my booking. And so at the airport, they asked, special assistance passengers first. And I've gone up and they've gone, "We don't want you, we want special assistance." And I'm like, "I actually am."

And so then the first time that I got up to use the bathroom, and then they saw how severely affected I was and that my husband was helping me to get down, they've actually turned and said, "Oh, look, the business class toilets are closest, so we'll get you to use those ones." And then they had to get the lift in to get me off the plane, because we didn't land at a boarding gate. And so I actually then spent time with all of the flight crew and explained my stroke story and all the different effects of it.

Chris: [07:52] That's interesting, because I guess they're professionals who have to deal with people with all kinds of different issues, and you'd think that they would have some understanding of that. But...

Toni: Nothing. And even, I went to an NDIS information session that was held at the City of Casey, and I went up to the NDIS table, because I'm only getting ready to start the process, and they're like, "Oh, what? So is it for your children or elderly parents?" And I'm like, "No, it's actually for me." And just the look of disbelief is... So again, I go through the spiel.

Chris: [08:25] Exactly, yeah. Now, before we record this podcast, we normally put a call out to our community for questions, and someone asked about whether children and young adults can be a bit more flexible in their thinking, a bit better to be able to understand when someone is facing difficulties. Whereas those who are older, perhaps are a bit more fixed in their assumptions. Do you think that that's the case at all?

Toni: I personally haven't experienced it in my experience, because a lot of my StrokeSafe talks are with Probus clubs and things that. So it's with a lot of older people. They do understand. They really empathise, I suppose, because a lot of what I'm experiencing, whether it's the isolation of not being able to go out, needing to have someone with me, they're things that they're experiencing. So they actually can relate to that a lot, which I think, for a lot of young people, they look at you and go, "Yeah, she's old, we don't really..." They don't have that relatable component to it.

Chris: [09:20] Right, okay. Okay. So, do you have an ideal in your mind, or how you'd like to see people treat those like yourself who have invisible disabilities?

Toni: Look, I've had some really bad experiences, and then I've had some good ones. The worst one was probably, I'd gone away on holiday and we were going to catch a ferry. So we parked in the disabled parking spot, because I knew that once I walk up over the water, I get affected. So we've parked in there and a couple of the workers were outside, on their morning tea break, whatever, and they've had a go at me for parking in there. And I've said to them, "Look, I've actually got a sticker. I've had multiple strokes, so I'm entitled to use it." And as I've walked off you hear them talking to each other and then one of them says very loudly. "Yeah, and the guy that usually uses it has lost his legs." So I actually went to their manager and said, "You need to educate them," and things like that.

Toni: But then there's other people, like I've got friends that know that, okay, if we're going out for a coffee, I can only go out for an hour. So it's all about, like I said, that education, and that's the key part to it.

Chris: So getting that understanding.

Toni: Yeah.

Chris: [10:32] Okay. What advice, then, would you give to people who are dealing with invisible disability?

Toni: Okay. Like I said before, you can't expect people to make allowances or to be understanding if they don't know about it. So what you have to decide is how much you're willing to share of your story. So I think a lot of that can come down to what you've accepted about what you're going through, what you're experiencing. And once you've decided what you're willing to share, then do it. Because then once you do share that, life becomes a lot easier. In my experience, that's what I've found, by sharing that. We've got a restaurant that we go to up in Gippsland that, because we've explained to Marty that I need to sit in a quieter spot so that I can stay a bit longer, as soon as we book, he puts aside a particular table for us, because he knows that's where I'll be most comfortable. And so those little touches really do make a big difference.

Chris: [11:31] Thank you very much Toni, and I hope you keep up the good work speaking as a StrokeSafe Ambassador.

Toni: Thank you.

Chris: Toni will be sticking around while we talk to our next guests, but for now that was stroke survivor Toni Arfaras.

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Chris: [12:10] Now, our next guest is Professor Ian Kneebone. Ian is a clinical psychologist and researcher at the University of Technology, Sydney, and he's a member of the Stroke Foundation's Research Advisory Committee.

Ian, welcome to the podcast.

Ian: Oh, thanks for having me.

Chris: [12:23] We're talking about invisible or hidden disabilities, and that can cover many kinds of issues. What sort of things do you think would be considered the banner of invisible disabilities?

Ian: Well, I think there's a range of things in stroke, and I think they're the things that literally are invisible because you can't see them. Some of the things that don't become apparent till you talk to someone, for instance, so someone may have a receptive language or communication problem, often called aphasia, also cognitive deficits, things memory, decision making, problem solving ability, are very common post-stroke and sometimes don't ameliorate over time, or with the assistance of rehabilitation.

I think, also, one of the things that we see certainly in psychology is the associated mood problems. You're at much greater risk of depression and anxiety after stroke than the normal population. So I think we need to factor that in as that something you can't see, and can really affect, not only rehabilitation outcomes, but even morbidity after a stroke.

Chris: [13:25] Okay, so is this a case where you have communication difficulties like aphasia are themselves an invisible disability, like you said. Is this a case where that sort of thing is then leading to further issues with mood?

Ian: Certainly. Certainly. As I say, even after stroke, if we see 25% to 30% of people having depression after stroke, that incident is doubled for people with aphasia. So, you've kind of got a double jeopardy having had a stroke and the associated disability and challenges with that. But then also the specific challenges of a communication difficulty add to the risk of that.

So the components that we do to try and prevent that occurring in people with aphasia, because they're at such high risk, are things like goal setting, developing a stroke story, and Toni, who's spoken before can tell you the benefits of having a stroke story and being able to recount that and understanding themselves in the context of their stroke, looking at people who are close to you being trained in supportive communication to assist communication with you, looking at how to find the positive and stay connected socially, are other aspects of the ASK program.

Chris: [14:36] Okay. Now, another area where invisible disability often becomes a really big challenge for people is when they try to return to work, which I understand is another topic that you've researched. What sort of things can help people returning to work with a disability?

Ian: Well, probably the strongest thing in terms of the research about return to work after a stroke is clearly that getting good rehabilitation, so getting the best outcome. So, having things like being able to do more functionally, fewer neurological deficits, better cognitive ability, are the most common predictors of return to work.

But some of the things are certainly preparation, knowing one's rights with respect to returning to work. The best thing we do know is that if you can return with a previous employer, there's a great advantage in that rather than starting again with somebody. So someone you've got a history with, who may be able to modify their workplace if that's needed. The other things for those who are looking for new jobs, looking at assessing their skills and looking at job interview skills, all those sorts of things that's a standard and supportive for anyone returning to work are very useful.

Chris: [15:48] We’ve heard from Toni, though, about, I guess the importance of having to explain the issues that you're going through. Is that something that is a big factor, you think, in returning to work, and is perhaps where having that prior relationship with the organisation helps?

Ian: Yes, so certainly some of the things we do in interventions to support people returning to work if they wish to do so include looking at the questions they might be asked about disability, how much they feel they're able to express about their disability and how that might work out, so how to respond to questions from an employer. Also the opportunities to have someone, possibly an occupational therapist or another member of the stroke rehab team, talking with the employer about the disability level and the support. So people have got a realistic expectation of the return to work program and of the capacities of the individual. And also people aren't saying, "Oh, they've had a stroke, they can't come back."

So stopping and interfering with those black and white type approaches to things. And also very much, the hidden disabilities we're talking about, can make a difference, so cognitive deficits. You can have a very small, say, executive dysfunction we call it, the problem-solving, higher order decision-making deficit. So it's very mild, hasn't been present at all in your rehab, hasn't needed to be addressed because you aren't being particularly challenged in perhaps returning to your normal day-to-day activities. But once you're in a workplace, that tends to be where the biggest cognitive challenges lie.

It's not until you go back to work, and I've worked with executives and people who've had strokes and returning to high level decision-making environments, and it's only when they go back to work that they're finding that they've got residual deficits that they weren't really aware of. And that's why we think with return to work, cognitive assessment and looking at the demands of the environment are very important as part of the occupational rehabilitation.

Chris: [17:49] I guess a different aspect might be trying to find people who do understand what you're going through. So I'm thinking things like peer support, that sort of thing. Can those be important in helping people adjusting to their life after stroke?

Ian: Well, interestingly enough, I think our anecdotal evidence is certainly that that's the case, and there are literally hundreds of these groups. Where I've worked in the UK and in Australia with stroke support and people speak about the benefits, but there's limited research to support the benefits. I mean, certainly anecdotally we see people get a lot of support from being with people in similar circumstances and learning from what works for them. And I think, Toni was talking earlier and her sharing her experiences to people with stroke and those without stroke makes a real benefit, potentially to her, but also to those other people on the other end of sharing that stroke story.

Chris: [18:43] Okay, so do you have any other advice then for people who are dealing with invisible disabilities?

Ian: I think certainly from the point of view of mood state, I've talked about the high incidence of depression and anxiety after stroke. And some people don't seek assistance and support with that element because they think it's, of course I've had a stroke, I'm going to be depressed or anxious. So, if we talk about after aphasia, maybe 60% of people have a significant depression at some point, we're also saying that 40% of people don't. So while it's understandable, it's not inevitable. And if we can work with people to change that mood difficulty, to improve things for them, they're going to have better rehabilitation outcomes, whether that's return to work or life participation, or return to previous roles in terms of family and the community as well.

Chris: [19:40] Great. Well, thank you very much Ian, and good luck with your continuing research.

Ian: Okay, thank you very much.

Chris: Cheers.

That was psychologist Professor Ian Kneebone.

Announcer: [19:49] Getting good results at every stage of your stroke recovery depends on getting good healthcare.

When you're in hospital, you need to know what to expect from your stroke team and what to do if something goes wrong.

And when you're out of hospital, you need to know how to access rehabilitation services that you can afford, so you can continue your stroke recovery.

There's a lot of help out there, but the health system is complicated, and it can be tricky to navigate.

The EnableMe website can help, with information on how the healthcare system works for stroke and the right links to find the help that you need. We also tell you how to choose a good GP.

You can find all this by looking for Getting Good Healthcare under the resources tab on the EnableMe website. That's enableme.org.au.

Chris: [20:36] Our final guest is social worker Siobhan McGinniss, who can be heard on the Stroke Foundation's StrokeLine.

Siobhan, it's good to have you here again.

Siobhan: Yeah, thanks Chris. Thanks for inviting me, it's always a pleasure.

Chris: [20:46] And of course we still have Toni Arfaras with us in the studio.

Now, as we've heard, there are a lot of disabilities that might be considered invisible, and we don't want to go into too much detail because we've covered them in other podcasts and also, Ian and Toni have talked a bit about them as well. But I feel it's worth looking at two of the most common issues that people talk about facing, which are memory problems and fatigue. Do you have any advice for dealing with those in particular?

Siobhan: Yeah. Look, thanks for that Chris. I think, yeah, memory and fatigue are certainly issues that are raised on StrokeLine a great deal.

We always, or generally often say to people, make sure that if you are feeling very fatigued, that you actually raise it with your GP or your neurologist as well, just to make sure that there's no underlying other causes of the fatigue, so things like perhaps changes in mood, dietary deficiencies, side effects from medications, and particularly I think if people have had post-stroke fatigue and it gets worse or that they find that it's impacting more on their daily activities, that they don't necessarily raise that with their GP. So I think it's important to do that.

Toni touched on listening to your body. Actually listen to how you're feeling. We will often say that it's much easier to manage fatigue post stroke if you don't let it get to the point where you can't manage it. So we often hear that people talk about having that fatigue hangover, so feeling tired and pushing through and keeping going, and then finding that the next week is very difficult for them to manage as well.

Talk about how you're feeling. Talk about the impact that it has on you. I know, Toni, you were talking about the fact that sometimes people just don't understand when you talk about fatigue, we often talk to people about using language that other people might understand. So things like "brain fog" or "rubber brain" or "walking in glue", those sorts of things, which can be an emotional description of how you're feeling as well, and better help people understand.

Memory, again, can be affected by fatigue. It can also be affected by things like pain and sleep problems as well. There's a really good podcast on EnableMe about memory and that goes through some really good strategies. But the strategies that we often talk about are internal strategies, so looking at strategies to help modify your approach to a task. So for example, if you had difficulties with word finding, or difficulties, say, remembering names, so if I'm introduced to Chris and I would often recommend that people say, "Look, I have problems with my memory. I may forget your name. I may ask it again. It's not because you're not memorable, it's because I have difficulty retrieving that information." So an internal strategy might be, okay, so I've met Chris, I went to school with a Chris. So I'm going to think about that Chris and when I look up, I have a greater capacity of bringing up Chris's name again as well.

External strategies can also be helpful. So using things like calendars to help remember appointments, diaries to put things in, smartphone apps that perhaps have alarms to remind you of things like taking medication or times that you have to leave for appointments. Setting up your iPhone with a reminder, say, the day before or two hours before you have to do something as well. Actually talking to your medical team or talking to your doctor if you're noticing that there have been any changes. Obviously as Toni said, you didn't have inpatient rehabilitation or a rehabilitation program, but actually raising memory issues with your doctor as a start. And then looking at perhaps support through, say, an occupational therapist or even neuropsychologist, who can do a full assessment to see how the changes are impacting on your daily activities and daily function.

Toni: [24:30] I would actually recommend, if you are suffering from fatigue, I think it's really worth going to your doctor and letting them see you when you're fatigued, because when I did that with my GP, that was when they really became aware of how affected I was. Because every other time, I'd made sure I was rested before I went, so that I could understand what was going on. When I was just really fatigued, they couldn't believe the difference between capable me and affected me.

Siobhan: And I think, sometimes, if that's not possible, talking to your worst day as well. So actually saying to them, this is me on a good day, I've had an hour rest this morning. On a bad day, I wouldn't have been able to walk straight into this room. I would have required support. I would have required help to get out of the chairs. Yeah, the same thing.

Toni: Yeah.

Chris: [25:19] I guess this fits in with what we're talking about, about explaining what you're going through to other people. Now, Toni's talked about some of the, I guess, the harmful side of when you try to, say, explain to government support, like the NDIS that she went through, or the disabled parking. How do people respond when they think you're cheating the system in some way, because you don't look that you have an issue?

Siobhan: So, applying for things like the NDIS and disabled parking permits, I think it's having a good team behind you. So having actually access to health professionals and medical professionals who can provide reports, particularly to the NDIS, on you at your worst day and the difficulties that you're having. Disability parking permits, I think having a good GP who, as Toni just said, has seen you on a bad day so that they can actually document that legitimately.

When you're talking to people who say to you, "Oh, you look good," or, "You look fine," or even your GP, who's seeing you in a good position, I think it's about being open and being honest.

Again, going back to thinking about that language, actually trying to explain to people, "Well, this morning I've got up, I've had a shower. I've been really, really tired when I've done that. So I've actually sat down for half an hour and done some mindfulness or meditation, or had a rest, and now I'm able to get up and move around. On days where I'm busy, you'll find that I find it really difficult to walk or to be able to communicate effectively with you as well."

I think, as Toni's talked about, educating people, so actually educating people about the impacts of these disabilities, talking to people about assumptions, calling people on their assumptions as well. So, just because it's not something that can be seen doesn't mean that it's not a very real situation for the person who's experienced it as well.

The Stroke Foundation have some good fact sheets and podcasts and really good forum posts, so if you've got people who are saying, "Oh, but you look fine," maybe suggesting that they have a look at the Stroke Foundation information so that they can learn a little bit more and understand a little bit more about what's going on, not only for you but for a number of stroke survivors as well.

Chris: [27:35] Okay. Now, on the other hand, I'm sure there are plenty of people who mean well but just simply don't know what to say to stroke survivors or how to help. What can those people do?

Siobhan: I think all of us should be aware of our own assumptions, so actually not assuming that somebody is either fine or is not fine, or needs us to do something for them, so not giving unsolicited advice. So, if somebody reaches out and says to you, "Look, I'm really struggling, I'm finding that fatigue is stopping me from doing x, y, or z," that's fine. Actually talk to them about it, ask them what would help. Ask them what they could do to actually make things a bit easier for you or support you. Don't take things away. So don't say to Toni, "Well, I'll do your supermarket shopping for you." Or, "Here's 19 meals prepared for you." Actually say, "Well, what would be helpful to you?" as well.

Spread the awareness. When you come across somebody who has a hidden disability, who has talked to you about it, actually talk about that. Raise it. Don't be afraid to talk about it. Don't be afraid to raise it in your social circles. Don't be afraid to speak to your friends and family about it. I think there's a lot of information out there now in the media and in social media about hidden disabilities. Don't be afraid to actually stand up and say something about it.

Ask questions. Say to someone like Toni, "Look, you present really well. You look like you're doing really well, but how's it affected you? Not just physically, but actually how has it affected you? What's the impact that it's had on you? What do you find the most difficult as well?" Don't stop including people in activities. If someone is fatigued and has told you that they're fatigued after a stroke, don't assume that they won't want to do anything, or they won't want to go somewhere, or they won't want to be invited out. Actually keep including them. Just say to them, "Look, if it doesn't suit you, that's fine, but I'd like you to come," or, "I'd to come around and visit you," and see what would work for themselves.

Be patient. Pay attention, be around, be a friend. Be available for people if they want to talk about what's going on and be aware that perhaps going out on social occasions, or you dropping in like you used to for a cup of tea or coffee may not be appropriate any more. So actually ask them what would suit them as well.

Chris: [29:55] Okay. So, finally to finish up, what are your top tips for people dealing with an invisible disability?

Siobhan: I think as Toni said, education. Having the opportunity to go out and share your stroke story and talk about what's happened to you and the difficulties, the impact that these difficulties have had on you as well. Reach out to friends and family, talk about it. Reach out to your GP, reach out to your neurologist, find somebody who you can feel comfortable in talking to. Communicate well with people, such as work colleagues, or teachers, or lecturers if you're returning to study, as well.

Find somebody you feel comfortable with and make sure that you keep talking with them as well. Think about the priorities for you. Think about planning out your days, thinking about ways that you can recognise when you're getting to a point where you need to rest, or when you're finding that it is more difficult. I know we talked about sensory overload and Toni being aware that if she goes to Fountain Gate, that she only spends a maximum of an hour there, or that she doesn't drive, because she knows that the sensory overload can cause difficulties. So returning home could be more challenging. So be aware of your own limitations as well.

I think focus on the small victories, focus on the things that you can do. Be really pleased with what you've been able to achieve. I think the number of things that a stroke can impact is huge. So if you've been able to have coffee with a friend one day, then that's fantastic. You've actually been able to achieve that. Going back to work, that's a huge step. Being able to go out and volunteer and be a StrokeSafe Ambassador is wonderful. So actually celebrate those achievements.

Chris: [31:47] Thanks Siobhan, that’s some really positive advice. Now remember, if you want to speak to a health professional like Siobhan, you can call StrokeLine on 1800 787 653, or 1800 STROKE. Or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.

If you’d like to have a StrokeSafe Ambassador like Toni give a free talk to your community group or workplace and share their personal experience of stroke, along with how to recognise the signs and prevent strokes, visit the Stroke Foundation website on strokefoundation.org.au/strokesafe.

And if you like what you've heard today, please take the time to give us a good rating and review on iTunes or Apple podcasts as that helps lift us up in the search rankings, so that other people can find our podcasts.

Thanks once again to our guests, Toni Arfaras, Ian Kneebone and Siobhan McGinniss.

Announcer: That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.

Hidden disability

Episode 22, 15 August 2019

Many of the challenges that people face after stroke, including fatigue, memory loss, even speech difficulties, aren’t visible to those around them. In this podcast, we talk about the impact of invisible and hidden disabilities, how to make others understand and some things you can do to live well while dealing with them.
 
We speak to stroke survivor and StrokeSafe Ambassador Toni Arfaras, psychologist and researcher Professor Ian Kneebone, and social worker Siobhan McGinniss from StrokeLine.

 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.

The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your healthcare professionals.

You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat and beat stroke.

Chris: [00:33] Many of the challenges that people face after stroke are not visible to those around them. So issues like fatigue, memory loss, even speech difficulties, aren't immediately apparent. And this makes it hard for others to understand what stroke survivors are going through, and it can be a barrier to stroke survivors getting the support they need.

In this podcast, we're going to talk about the impact of invisible and hidden disabilities, how to make others understand, and some things you can do to live well while dealing with them. We'll speak to a psychologist and researcher Professor Ian Kneebone, and to social worker Siobhan McGinniss from StrokeLine.

But first, we have with us stroke survivor Toni Arfaras. Toni is a former primary school teacher who now continues to educate as a StrokeSafe Ambassador, as which she speaks to community groups and workplaces on recognising the signs and preventing strokes.

Toni, thanks for joining us today.

Toni: Thank you for having me.

Chris: [01:31] Now, our first question will be no surprise to anyone who's listened to this podcast before. Could you just quickly tell us your stroke story?

Toni: Okay. Back in 2013, September, I was down at my holiday house, got up to feed the dog and went to the toilet. And after I've washed my hands, I've gone to walk out of the bathroom and fell to the side of the room. That was all I had, was just that I fell and I had this sense of looking down on myself. Because there were stairs nearby, I called for my husband to help me get back to bed. So then he did and I went back to bed, felt a little bit sick, but nothing major and had the tiniest of headaches. We were actually meant to be spending that day painting our garage. But I just slept the whole day. And all I could say is that I felt like my head was too heavy for my neck. And my husband thought I just was trying to get out of painting, but I wasn't.

So, like I said, I spent the day pretty well sleeping all day, and no other real symptoms that I can describe, apart from a feeling of just not feeling right. The next day, I drove home because I suffered from severe motion sickness. So I thought rather than acerbating that feeling, I would drive and do that, so I did. On the Friday I saw an osteopath and explained what had happened, and I'd had that osteopath appointment booked for the previous month. She did basic neurological tests and said, "Look, everything seems fine. I'll just do a gentle treatment and let's see how you go." So she did that. I actually felt a little bit better, but she said, "If you feel worse, don't get better, then go and see your GP."

On the Sunday, so between the Friday and the Sunday, I still was just incredibly tired, just wanting to sleep all the time. On the Sunday, my husband said, "I think I should take you to the emergency department." I said, "Don't be stupid. It's only for emergencies. You know? So I'll go and see the doctor tomorrow if I'm no better." On the Monday I went and saw my GP, they did the same tests that the osteo had done, but I actually had lost some sensation in my face and arm, and also had got some weakness down my left hand side.

So they rang round to get me into an MRI as soon as they could. That was for the next day. So I went and did the MRI and a CT scan, went back to my doctor's on the Wednesday to get the results. And I've walked in and she just said, "I'm so sorry, you've had a stroke." That was the start.

Chris: [03:53] Yeah, okay. We're here to talk about invisible or hidden disabilities. Can you tell us a bit about what you experienced in terms of that?

Toni: Okay, so I suffer a lot, like I've mentioned, with fatigue, but also, it's affected my, as you said, I was a primary school teacher, but it has affected my maths, my spelling... I can no longer read books. I just can't follow stories or anything like that. And I was a really big reader beforehand. Decision making is a really big thing, my emotions, and that goes hand in hand with the decision making. Then sensory overload is a major factor. So whilst I present now as, people would not know that anything is wrong, I live near Fountain Gate Shopping Centre, so that's where I go to do my grocery shopping, and after about an hour I actually lose the ability to walk and talk properly, and I suffer from left side neglect. So I actually lose my vision in my left hand side, and my husband has to walk on that side, otherwise I'll start bumping into people or things that I just aren't aware of that are there.

Chris: [05:06] Yeah. Well, thank you very much for braving the crowds to come into the city today to record. In one of your blogs on EnableMe, because you are a frequent visitor on EnableMe, you said that "disability is not a competition." How well do you think people understand what it means to have hidden disabilities and what you're going through?

Toni: Look, people don't understand unless they've actually seen me when I'm affected. And I think in a way that's understandable, because how can you know about something if you haven't been educated about it, or you haven't got that visual stimulus to see what's going on? But once I start getting affected, it actually starts affecting my speech and things that. So then they do realise, but it's the trying to get people to understand. My day has to be planned around, like I plan for a few days in advance as to what I'm doing. And so sometimes I'll have to say to people, "Look, I can't do this because I'm going to be tired from that." They're like, "What a load of rubbish, they just don't want to come. They're trying to make an excuse, sort of thing." So there's that side of it, which can be a bit hard to deal with because you get some funny looks for it.

Chris: [06:17] Yeah. But I imagine you are quite a good communicator, because as I said, you have a teaching background, you do a lot of speaking as a StrokeSafe Ambassador. Do you think it's possible to explain this to people to get the message across of what a hidden disability is like?

Toni: I think so. I think I've been doing a good job. Every opportunity that I get, I do take advantage of. So even, for example, I've recently come back from a holiday from the Northern Territory, and so flying really affects me, so I can walk on the plane and I'm perfectly fine. And as soon as other people start walking on the plane and then the plane takes off, again I need assistance with walking and talking. I actually need wheelchairs to get off the plane, and everything. So with this trip to the Northern Territory, I've always asked for special consideration, the special assistance on my booking. And so at the airport, they asked, special assistance passengers first. And I've gone up and they've gone, "We don't want you, we want special assistance." And I'm like, "I actually am."

And so then the first time that I got up to use the bathroom, and then they saw how severely affected I was and that my husband was helping me to get down, they've actually turned and said, "Oh, look, the business class toilets are closest, so we'll get you to use those ones." And then they had to get the lift in to get me off the plane, because we didn't land at a boarding gate. And so I actually then spent time with all of the flight crew and explained my stroke story and all the different effects of it.

Chris: [07:52] That's interesting, because I guess they're professionals who have to deal with people with all kinds of different issues, and you'd think that they would have some understanding of that. But...

Toni: Nothing. And even, I went to an NDIS information session that was held at the City of Casey, and I went up to the NDIS table, because I'm only getting ready to start the process, and they're like, "Oh, what? So is it for your children or elderly parents?" And I'm like, "No, it's actually for me." And just the look of disbelief is... So again, I go through the spiel.

Chris: [08:25] Exactly, yeah. Now, before we record this podcast, we normally put a call out to our community for questions, and someone asked about whether children and young adults can be a bit more flexible in their thinking, a bit better to be able to understand when someone is facing difficulties. Whereas those who are older, perhaps are a bit more fixed in their assumptions. Do you think that that's the case at all?

Toni: I personally haven't experienced it in my experience, because a lot of my StrokeSafe talks are with Probus clubs and things that. So it's with a lot of older people. They do understand. They really empathise, I suppose, because a lot of what I'm experiencing, whether it's the isolation of not being able to go out, needing to have someone with me, they're things that they're experiencing. So they actually can relate to that a lot, which I think, for a lot of young people, they look at you and go, "Yeah, she's old, we don't really..." They don't have that relatable component to it.

Chris: [09:20] Right, okay. Okay. So, do you have an ideal in your mind, or how you'd like to see people treat those like yourself who have invisible disabilities?

Toni: Look, I've had some really bad experiences, and then I've had some good ones. The worst one was probably, I'd gone away on holiday and we were going to catch a ferry. So we parked in the disabled parking spot, because I knew that once I walk up over the water, I get affected. So we've parked in there and a couple of the workers were outside, on their morning tea break, whatever, and they've had a go at me for parking in there. And I've said to them, "Look, I've actually got a sticker. I've had multiple strokes, so I'm entitled to use it." And as I've walked off you hear them talking to each other and then one of them says very loudly. "Yeah, and the guy that usually uses it has lost his legs." So I actually went to their manager and said, "You need to educate them," and things like that.

Toni: But then there's other people, like I've got friends that know that, okay, if we're going out for a coffee, I can only go out for an hour. So it's all about, like I said, that education, and that's the key part to it.

Chris: So getting that understanding.

Toni: Yeah.

Chris: [10:32] Okay. What advice, then, would you give to people who are dealing with invisible disability?

Toni: Okay. Like I said before, you can't expect people to make allowances or to be understanding if they don't know about it. So what you have to decide is how much you're willing to share of your story. So I think a lot of that can come down to what you've accepted about what you're going through, what you're experiencing. And once you've decided what you're willing to share, then do it. Because then once you do share that, life becomes a lot easier. In my experience, that's what I've found, by sharing that. We've got a restaurant that we go to up in Gippsland that, because we've explained to Marty that I need to sit in a quieter spot so that I can stay a bit longer, as soon as we book, he puts aside a particular table for us, because he knows that's where I'll be most comfortable. And so those little touches really do make a big difference.

Chris: [11:31] Thank you very much Toni, and I hope you keep up the good work speaking as a StrokeSafe Ambassador.

Toni: Thank you.

Chris: Toni will be sticking around while we talk to our next guests, but for now that was stroke survivor Toni Arfaras.

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Chris: [12:10] Now, our next guest is Professor Ian Kneebone. Ian is a clinical psychologist and researcher at the University of Technology, Sydney, and he's a member of the Stroke Foundation's Research Advisory Committee.

Ian, welcome to the podcast.

Ian: Oh, thanks for having me.

Chris: [12:23] We're talking about invisible or hidden disabilities, and that can cover many kinds of issues. What sort of things do you think would be considered the banner of invisible disabilities?

Ian: Well, I think there's a range of things in stroke, and I think they're the things that literally are invisible because you can't see them. Some of the things that don't become apparent till you talk to someone, for instance, so someone may have a receptive language or communication problem, often called aphasia, also cognitive deficits, things memory, decision making, problem solving ability, are very common post-stroke and sometimes don't ameliorate over time, or with the assistance of rehabilitation.

I think, also, one of the things that we see certainly in psychology is the associated mood problems. You're at much greater risk of depression and anxiety after stroke than the normal population. So I think we need to factor that in as that something you can't see, and can really affect, not only rehabilitation outcomes, but even morbidity after a stroke.

Chris: [13:25] Okay, so is this a case where you have communication difficulties like aphasia are themselves an invisible disability, like you said. Is this a case where that sort of thing is then leading to further issues with mood?

Ian: Certainly. Certainly. As I say, even after stroke, if we see 25% to 30% of people having depression after stroke, that incident is doubled for people with aphasia. So, you've kind of got a double jeopardy having had a stroke and the associated disability and challenges with that. But then also the specific challenges of a communication difficulty add to the risk of that.

So the components that we do to try and prevent that occurring in people with aphasia, because they're at such high risk, are things like goal setting, developing a stroke story, and Toni, who's spoken before can tell you the benefits of having a stroke story and being able to recount that and understanding themselves in the context of their stroke, looking at people who are close to you being trained in supportive communication to assist communication with you, looking at how to find the positive and stay connected socially, are other aspects of the ASK program.

Chris: [14:36] Okay. Now, another area where invisible disability often becomes a really big challenge for people is when they try to return to work, which I understand is another topic that you've researched. What sort of things can help people returning to work with a disability?

Ian: Well, probably the strongest thing in terms of the research about return to work after a stroke is clearly that getting good rehabilitation, so getting the best outcome. So, having things like being able to do more functionally, fewer neurological deficits, better cognitive ability, are the most common predictors of return to work.

But some of the things are certainly preparation, knowing one's rights with respect to returning to work. The best thing we do know is that if you can return with a previous employer, there's a great advantage in that rather than starting again with somebody. So someone you've got a history with, who may be able to modify their workplace if that's needed. The other things for those who are looking for new jobs, looking at assessing their skills and looking at job interview skills, all those sorts of things that's a standard and supportive for anyone returning to work are very useful.

Chris: [15:48] We’ve heard from Toni, though, about, I guess the importance of having to explain the issues that you're going through. Is that something that is a big factor, you think, in returning to work, and is perhaps where having that prior relationship with the organisation helps?

Ian: Yes, so certainly some of the things we do in interventions to support people returning to work if they wish to do so include looking at the questions they might be asked about disability, how much they feel they're able to express about their disability and how that might work out, so how to respond to questions from an employer. Also the opportunities to have someone, possibly an occupational therapist or another member of the stroke rehab team, talking with the employer about the disability level and the support. So people have got a realistic expectation of the return to work program and of the capacities of the individual. And also people aren't saying, "Oh, they've had a stroke, they can't come back."

So stopping and interfering with those black and white type approaches to things. And also very much, the hidden disabilities we're talking about, can make a difference, so cognitive deficits. You can have a very small, say, executive dysfunction we call it, the problem-solving, higher order decision-making deficit. So it's very mild, hasn't been present at all in your rehab, hasn't needed to be addressed because you aren't being particularly challenged in perhaps returning to your normal day-to-day activities. But once you're in a workplace, that tends to be where the biggest cognitive challenges lie.

It's not until you go back to work, and I've worked with executives and people who've had strokes and returning to high level decision-making environments, and it's only when they go back to work that they're finding that they've got residual deficits that they weren't really aware of. And that's why we think with return to work, cognitive assessment and looking at the demands of the environment are very important as part of the occupational rehabilitation.

Chris: [17:49] I guess a different aspect might be trying to find people who do understand what you're going through. So I'm thinking things like peer support, that sort of thing. Can those be important in helping people adjusting to their life after stroke?

Ian: Well, interestingly enough, I think our anecdotal evidence is certainly that that's the case, and there are literally hundreds of these groups. Where I've worked in the UK and in Australia with stroke support and people speak about the benefits, but there's limited research to support the benefits. I mean, certainly anecdotally we see people get a lot of support from being with people in similar circumstances and learning from what works for them. And I think, Toni was talking earlier and her sharing her experiences to people with stroke and those without stroke makes a real benefit, potentially to her, but also to those other people on the other end of sharing that stroke story.

Chris: [18:43] Okay, so do you have any other advice then for people who are dealing with invisible disabilities?

Ian: I think certainly from the point of view of mood state, I've talked about the high incidence of depression and anxiety after stroke. And some people don't seek assistance and support with that element because they think it's, of course I've had a stroke, I'm going to be depressed or anxious. So, if we talk about after aphasia, maybe 60% of people have a significant depression at some point, we're also saying that 40% of people don't. So while it's understandable, it's not inevitable. And if we can work with people to change that mood difficulty, to improve things for them, they're going to have better rehabilitation outcomes, whether that's return to work or life participation, or return to previous roles in terms of family and the community as well.

Chris: [19:40] Great. Well, thank you very much Ian, and good luck with your continuing research.

Ian: Okay, thank you very much.

Chris: Cheers.

That was psychologist Professor Ian Kneebone.

Announcer: [19:49] Getting good results at every stage of your stroke recovery depends on getting good healthcare.

When you're in hospital, you need to know what to expect from your stroke team and what to do if something goes wrong.

And when you're out of hospital, you need to know how to access rehabilitation services that you can afford, so you can continue your stroke recovery.

There's a lot of help out there, but the health system is complicated, and it can be tricky to navigate.

The EnableMe website can help, with information on how the healthcare system works for stroke and the right links to find the help that you need. We also tell you how to choose a good GP.

You can find all this by looking for Getting Good Healthcare under the resources tab on the EnableMe website. That's enableme.org.au.

Chris: [20:36] Our final guest is social worker Siobhan McGinniss, who can be heard on the Stroke Foundation's StrokeLine.

Siobhan, it's good to have you here again.

Siobhan: Yeah, thanks Chris. Thanks for inviting me, it's always a pleasure.

Chris: [20:46] And of course we still have Toni Arfaras with us in the studio.

Now, as we've heard, there are a lot of disabilities that might be considered invisible, and we don't want to go into too much detail because we've covered them in other podcasts and also, Ian and Toni have talked a bit about them as well. But I feel it's worth looking at two of the most common issues that people talk about facing, which are memory problems and fatigue. Do you have any advice for dealing with those in particular?

Siobhan: Yeah. Look, thanks for that Chris. I think, yeah, memory and fatigue are certainly issues that are raised on StrokeLine a great deal.

We always, or generally often say to people, make sure that if you are feeling very fatigued, that you actually raise it with your GP or your neurologist as well, just to make sure that there's no underlying other causes of the fatigue, so things like perhaps changes in mood, dietary deficiencies, side effects from medications, and particularly I think if people have had post-stroke fatigue and it gets worse or that they find that it's impacting more on their daily activities, that they don't necessarily raise that with their GP. So I think it's important to do that.

Toni touched on listening to your body. Actually listen to how you're feeling. We will often say that it's much easier to manage fatigue post stroke if you don't let it get to the point where you can't manage it. So we often hear that people talk about having that fatigue hangover, so feeling tired and pushing through and keeping going, and then finding that the next week is very difficult for them to manage as well.

Talk about how you're feeling. Talk about the impact that it has on you. I know, Toni, you were talking about the fact that sometimes people just don't understand when you talk about fatigue, we often talk to people about using language that other people might understand. So things like "brain fog" or "rubber brain" or "walking in glue", those sorts of things, which can be an emotional description of how you're feeling as well, and better help people understand.

Memory, again, can be affected by fatigue. It can also be affected by things like pain and sleep problems as well. There's a really good podcast on EnableMe about memory and that goes through some really good strategies. But the strategies that we often talk about are internal strategies, so looking at strategies to help modify your approach to a task. So for example, if you had difficulties with word finding, or difficulties, say, remembering names, so if I'm introduced to Chris and I would often recommend that people say, "Look, I have problems with my memory. I may forget your name. I may ask it again. It's not because you're not memorable, it's because I have difficulty retrieving that information." So an internal strategy might be, okay, so I've met Chris, I went to school with a Chris. So I'm going to think about that Chris and when I look up, I have a greater capacity of bringing up Chris's name again as well.

External strategies can also be helpful. So using things like calendars to help remember appointments, diaries to put things in, smartphone apps that perhaps have alarms to remind you of things like taking medication or times that you have to leave for appointments. Setting up your iPhone with a reminder, say, the day before or two hours before you have to do something as well. Actually talking to your medical team or talking to your doctor if you're noticing that there have been any changes. Obviously as Toni said, you didn't have inpatient rehabilitation or a rehabilitation program, but actually raising memory issues with your doctor as a start. And then looking at perhaps support through, say, an occupational therapist or even neuropsychologist, who can do a full assessment to see how the changes are impacting on your daily activities and daily function.

Toni: [24:30] I would actually recommend, if you are suffering from fatigue, I think it's really worth going to your doctor and letting them see you when you're fatigued, because when I did that with my GP, that was when they really became aware of how affected I was. Because every other time, I'd made sure I was rested before I went, so that I could understand what was going on. When I was just really fatigued, they couldn't believe the difference between capable me and affected me.

Siobhan: And I think, sometimes, if that's not possible, talking to your worst day as well. So actually saying to them, this is me on a good day, I've had an hour rest this morning. On a bad day, I wouldn't have been able to walk straight into this room. I would have required support. I would have required help to get out of the chairs. Yeah, the same thing.

Toni: Yeah.

Chris: [25:19] I guess this fits in with what we're talking about, about explaining what you're going through to other people. Now, Toni's talked about some of the, I guess, the harmful side of when you try to, say, explain to government support, like the NDIS that she went through, or the disabled parking. How do people respond when they think you're cheating the system in some way, because you don't look that you have an issue?

Siobhan: So, applying for things like the NDIS and disabled parking permits, I think it's having a good team behind you. So having actually access to health professionals and medical professionals who can provide reports, particularly to the NDIS, on you at your worst day and the difficulties that you're having. Disability parking permits, I think having a good GP who, as Toni just said, has seen you on a bad day so that they can actually document that legitimately.

When you're talking to people who say to you, "Oh, you look good," or, "You look fine," or even your GP, who's seeing you in a good position, I think it's about being open and being honest.

Again, going back to thinking about that language, actually trying to explain to people, "Well, this morning I've got up, I've had a shower. I've been really, really tired when I've done that. So I've actually sat down for half an hour and done some mindfulness or meditation, or had a rest, and now I'm able to get up and move around. On days where I'm busy, you'll find that I find it really difficult to walk or to be able to communicate effectively with you as well."

I think, as Toni's talked about, educating people, so actually educating people about the impacts of these disabilities, talking to people about assumptions, calling people on their assumptions as well. So, just because it's not something that can be seen doesn't mean that it's not a very real situation for the person who's experienced it as well.

The Stroke Foundation have some good fact sheets and podcasts and really good forum posts, so if you've got people who are saying, "Oh, but you look fine," maybe suggesting that they have a look at the Stroke Foundation information so that they can learn a little bit more and understand a little bit more about what's going on, not only for you but for a number of stroke survivors as well.

Chris: [27:35] Okay. Now, on the other hand, I'm sure there are plenty of people who mean well but just simply don't know what to say to stroke survivors or how to help. What can those people do?

Siobhan: I think all of us should be aware of our own assumptions, so actually not assuming that somebody is either fine or is not fine, or needs us to do something for them, so not giving unsolicited advice. So, if somebody reaches out and says to you, "Look, I'm really struggling, I'm finding that fatigue is stopping me from doing x, y, or z," that's fine. Actually talk to them about it, ask them what would help. Ask them what they could do to actually make things a bit easier for you or support you. Don't take things away. So don't say to Toni, "Well, I'll do your supermarket shopping for you." Or, "Here's 19 meals prepared for you." Actually say, "Well, what would be helpful to you?" as well.

Spread the awareness. When you come across somebody who has a hidden disability, who has talked to you about it, actually talk about that. Raise it. Don't be afraid to talk about it. Don't be afraid to raise it in your social circles. Don't be afraid to speak to your friends and family about it. I think there's a lot of information out there now in the media and in social media about hidden disabilities. Don't be afraid to actually stand up and say something about it.

Ask questions. Say to someone like Toni, "Look, you present really well. You look like you're doing really well, but how's it affected you? Not just physically, but actually how has it affected you? What's the impact that it's had on you? What do you find the most difficult as well?" Don't stop including people in activities. If someone is fatigued and has told you that they're fatigued after a stroke, don't assume that they won't want to do anything, or they won't want to go somewhere, or they won't want to be invited out. Actually keep including them. Just say to them, "Look, if it doesn't suit you, that's fine, but I'd like you to come," or, "I'd to come around and visit you," and see what would work for themselves.

Be patient. Pay attention, be around, be a friend. Be available for people if they want to talk about what's going on and be aware that perhaps going out on social occasions, or you dropping in like you used to for a cup of tea or coffee may not be appropriate any more. So actually ask them what would suit them as well.

Chris: [29:55] Okay. So, finally to finish up, what are your top tips for people dealing with an invisible disability?

Siobhan: I think as Toni said, education. Having the opportunity to go out and share your stroke story and talk about what's happened to you and the difficulties, the impact that these difficulties have had on you as well. Reach out to friends and family, talk about it. Reach out to your GP, reach out to your neurologist, find somebody who you can feel comfortable in talking to. Communicate well with people, such as work colleagues, or teachers, or lecturers if you're returning to study, as well.

Find somebody you feel comfortable with and make sure that you keep talking with them as well. Think about the priorities for you. Think about planning out your days, thinking about ways that you can recognise when you're getting to a point where you need to rest, or when you're finding that it is more difficult. I know we talked about sensory overload and Toni being aware that if she goes to Fountain Gate, that she only spends a maximum of an hour there, or that she doesn't drive, because she knows that the sensory overload can cause difficulties. So returning home could be more challenging. So be aware of your own limitations as well.

I think focus on the small victories, focus on the things that you can do. Be really pleased with what you've been able to achieve. I think the number of things that a stroke can impact is huge. So if you've been able to have coffee with a friend one day, then that's fantastic. You've actually been able to achieve that. Going back to work, that's a huge step. Being able to go out and volunteer and be a StrokeSafe Ambassador is wonderful. So actually celebrate those achievements.

Chris: [31:47] Thanks Siobhan, that’s some really positive advice. Now remember, if you want to speak to a health professional like Siobhan, you can call StrokeLine on 1800 787 653, or 1800 STROKE. Or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.

If you’d like to have a StrokeSafe Ambassador like Toni give a free talk to your community group or workplace and share their personal experience of stroke, along with how to recognise the signs and prevent strokes, visit the Stroke Foundation website on strokefoundation.org.au/strokesafe.

And if you like what you've heard today, please take the time to give us a good rating and review on iTunes or Apple podcasts as that helps lift us up in the search rankings, so that other people can find our podcasts.

Thanks once again to our guests, Toni Arfaras, Ian Kneebone and Siobhan McGinniss.

Announcer: That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.