Hi Jack,
Here are some answers from the Facebook community - your question definitely resonated!
Maree Ecomap: First of all, apologies in advance for a lengthy post! 😆 For me it depends. Several years on it's still not something I talk about much at first. If anyone seems interested, if someone else is struggling with something, I may open up and share my experiences too. At work there was no way I could cover it up as I went to hospital on a day I was supposed to be working and was out of action for a while; the key people were very understanding and accommodating. However out there in real life, some people just don't get it and probably look at me as if I have something wrong; that no longer worries me, I DO have something wrong! My numb leg, my head/concentration/speech, the extreme fatigue and having to leave work early because of it, affect my every single waking moment and basically governs what I do and cannot do! For a long time I thought my after effects weren't half as bad as some stroke survivors - and I consider myself really fortunate for this - so basically didn't say much, however after a while concluded that my experiences were valid as well and sharing how I manage may help others. I think it's important to share how stoke can affect young people, children and even babies as well as older people. I encourage others to live a more healthy/preventative lifestyle, in spite of that not really being relevant to my own stroke. I don't think I'm looked on any differently. I'm now older and my fatigue/lack of energy means I don't move in a lot of new circles, however I do discuss my stroke if and when I see fit. Others can discuss their cancers or diabetes, etc, so really, why shouldn't we discuss our strokes when in reality we may have to live with the "symptoms" all our lives. Play it by ear, Jack; let them know if you want to or think it relevant. All the best. xxx
Tim Ellis Many think that because you put passion and energy into your daily work that there must be no long term effects so don't ask how you are going. Of the few who ask, when you mention the fatigue it often gets the "everyone gets tired " reaction-so I hesitate to mention it any more.
Elaine Hannah Because I still walk with a limp it's easier to say I've had a stroke than to talk about all my ailments , people understand and usually want to help if you need it .x
Laine Yates Interesting question Jack. I’m 8 years post stroke & although the stroke doesn’t define me, I do share my story with people I meet & know. I think it’s important 2 get the message out in the community about stroke in young people & more importantly start conversations - the signs & urgency of getting 2 hospital etc.
Big hugs Jack xx
Nicholas Martin People I work with know my story. I have had 5 strokes, a brain hemorrhage and brain surgery. Multiple TIAs and suffer from fatigue. After my last TIA which happened at work the work nurse did a stroke awareness presentation for my colleagues. The company allows me to go home early if I get tired. For those of you who are having trouble weth employers. It is a legal requirement to allow you back to work and give you 12 months to transition. Use your occupational therapist to help you explain your situation
Hamish van den IJssel I kept it to myself (excluding those who new at the time) for the first 10 years. Not because I was ashamed, but because i didn’t feel It was their business. I was proud of what I achieved after 2 stokes and I didn’t want anyone to dismiss that. At 15 years I did a fundraiser where many friends found out for the first time what has happened. Everyone was supportive.
Kim Philps I don't focus on it, but I also don't hide it. Talking about it can be therapeutic and everyone has been thoughtful and supportive. In fact, talking about it has brought an awareness to some who didn't know much about stroke and many have thanked me for sharing my story. If feedback is anything otherwise, then maybe you're not around people who are as caring and supportive as you thought. I think that if you try to hide it, it will actually take longer to get better. Be open and let people help you! I went back to work in June after being off for a year and a half, and going back (and not hiding anything) has been the best experience for me. I even went to a completely different job with people who didn't know. It has all been good. My advice - as aweful as the stroke itself might have been, embrace it. It's part of your life now, and being open about it may help someone else, without even realizing it. All the best 🤗
Julie Allen I was performance managed out after I returned to work 2 weeks after a stroke which caused a loss of peripheral vision in my upper left quadrant
Sera Raicama Both of my minor strokes happened at work. They have being really supportive. When people ask me about my stroke, I'm not afraid of sharing what i went through. It's also a good opportunity to raise awareness that young people can also have strokes.
Toni Arfaras I'm not able to work but when in new social arenas I always make sure at least one eprson knows my history as I know that when my deficits kick in it can be quite confronting/scary for people who don;t know whta my 'normal' is. Whilst I'm more than happy to share my story with people it really is a personal choice so you need to do what you are comfortable with.
Given the chance of having another stroke is higher for stroke survivors it may be worth promoting the FAST message within your workplace but again that has to be soemthing you are comfortbale with.
Sharon Norris At first, yes, afraid my invisible disability could impact work prospects, but now I will talk about it if asked.
Duncan Mitchell I don't mind sharing my story and getting back into the job market after being made redundant was interesting, I find it was a good 'ice breaker getting going in interviews, etc. I have a white stick because of my low vision so I find it easy to start explaining that first. I'm not embarrassed in anyway about my stroke story and find getting my story out in the open isn't a problem in fact quite the opposite, I say 'own it's and get your story out to as many people as possible.
Terri Kendrick I have had many jobs with out people knowing my stroke history I don’t hide it but my neurosurgeon said I had no need to tell work as work is not affected by my condition and when people have found out they are gobsmacked that I am a stroke survivor I think it’s up to the individual if you want to tell people as long as it doesn’t affect your work there’s no need to say good luck terri
Marton Sadler I don't hide my stroke. My work colleagues are aware of it. But I don't seek to be treated differently.
Ali Bowen Be brave. Share your story. Lots of younger people have strokes these days. It is nothing to be ashamed of. I am a Nurse Unit Manager of a ward that is essentially stroke rehab. We do our best to restore people post stroke but its not always possible to achieve complete recovery. As a society, we need to be more tolerant of disability and support people where they need it, at home.
Semyon Denenberg Jack, it depends on your role and if you’re still able to perform what is required of your role. Work places are hit and miss, some places will go out of their way to support you and find ways they can give you tasks that take into account your limitations while others can use this as an excuse to exclude you and minimise your contribution to the business. You will need to make that call yourself as you know your work environment better than the rest of us. Good luck
Nisaba Merrieweather I have only minor long term deficits (not minor to me, but a whole lot better than many other people), and yes I do whatever I need to do to hide it from work, most of my friends, and even most of my family. I hate having to explain when it happened, what problems it left me with, and the strategies I use to cope, over and over and over. And I loathe and detest being pitied. So yes, it's no business of anyone's.
Margaret Lyons Donald My work colleagues are the best. Understanding and supporting. I love my second family as they look out for me so much. They recognize my bad days sometimes before I do. I'm a teacher and have even explained to the small groups I work with as part of my recovery
