Do you live with invisible disabilities?

Hi, Saran's video was first posted on Facebook - there was a huge conversation.

Here are some of the comments. If you post here, Saran will see them too.

Paula

Where do you start? This bought me to tears. It’s a horrible feeling when you feel white washed because people can’t see your disabilities on the outside.

Colleen

I had a stroke 5yrs ago and I still struggle with on going symptoms especially if I'm tired. My left side goes completely weak and sometimes my left leg is hard to move. I also have vestibular migraines with vertigo since my stroke and some days fatigue takes over. So I understand exactly what yr saying because you look fine on the outside others have no idea of what your coping with.

Sherree

Great topic - and one that’s hard to navigate I find. I think in general as a society, disability is physical, we’re not really taught about invisible defecits or even neuro divergence! Even after my stroke, because I didn’t have a physical deficit, I guess I felt like an imposter, like my stroke and brain damage wasn’t as bad or as valid as someone else’s because “I look ok!” It’s only as time has gone on and my recovery has thrown me a lot of hurdles, that I’ve become to understand it more and realise that in fact disability can be and is so invisible, that is sometimes so much harder to explain or for people to understand.

Kerry

Had my stroke at 57 about 5 years ago. It was in the left parietal lobe. I have some sensory loss in my right hand and my right arm is a bit weaker than my left. I cannot read for more than 5 or 10 minutes at a time. It is like my brain says no that’s enough. I have problems with recalling things, keep notes and lists, concentration, handwriting is rough, make spelling errors especially if letters are similar. I had to give up my job because when I have to recall and can’t and it is important I get very anxious. My neurologist said it was like having a hidden disability. I know when it happens but you wouldn’t unless I told you.

Tanya

I had a stroke that affected my cerebellum 5 months ago. I have small deficits with my right side of my body. Barely noticeable however l have balance issues and with that many challenges. You're right other people see me and they think that because l look and sound the same lm fine. l had a stroke that is invisible to others. They don't know how hard l work to regain my balance, drive a car, keep the dizziness at bay etc. They don't understand that l get fatigued. My stroke damaged my brain. I don't feel like an imposter. I have alot of empathy for people who have major deficits. I have reflected alot about my life since l had my stroke.

Derek

I had a brainstem stroke in 12/2003. My fatigue has improved incrementally, because of daily walking, I believe. I haven’t experienced any symptoms of fatigue for about 3 years now. I still have balance issues and short term memory problems. I also discovered, when visiting my birthplace RSA, that I have gaps in my memory related to my life there, as well.

Jennifer

Yep ... I'm so sick of being off balance all the time. Tonight I fell and burned my arm & shoulder on the wood heater ... but I'm ok because the world says I have to be.

Ursula

I can fully relate to what you are talking about

I had 2 strokes 2014 and 2015 . My left side is still quite badly affected and fatigue, sensual overload etc are still quite prevalent.

It is important to make people aware of these possible consequences of a stroke.

But I feel we have to also accept and understand that the people around us can’t necessarily know how we feel. We have to tell them patiently and repeatedly what our difficulties are.

We also have to be strong in setting our own limits in what we can expect from ourselves.

The other point is:

Our biggest enemy is self pity. We are still here! ( my chance of survival was 50%)

I can still see , hear , smell , enjoy my food and many other things and I can choose if I want to enjoy things in my life or not .

Also: there are so many people all around us who have issues not visible to us. We are not the only ones.

Raising awareness is great and you have started a great initiative.

Thank you

I so understand. I feel like a imposter I had a left partial stroke 2018. Firstly I was DX as perimenopausal migraine with aura. I am constantly TD my tiredness is because I am a single working mum with 2 kids. People don't believe I have had a stroke and I have to show them my scans and or medical certificate. FAST.. yep did not fit my profile of stroke the ambulance came told me overstressed mother go rest . I was in my last day of 4 weeks holiday.

I so feel like an imposter 

NC that must be so frustrating but you've still had a stroke!!! i feel like we need to scream from the roof top that stroke isn't always physical. so many invisible deficits that we live with every second of every day!!!  to have to feel like you need to justify that you've had a stroke and feel like an imposter is sad and makes me angry. we need to raise awareness of stroke and brain injury. PLUS you are a superstar  being a single mum of 2!!! 

I had a stroke three and a half years ago. Clot retrieval happened within three hours and everyone was pleased with my recovery.I am now 77 and struggle with the lingering effects of tiredness, a vague sense of being unbalanced and poor handwriting with my left hand, also fuzzy feeling in head and dizziness if I’ve overdone it.  I had three years of heart rhythm problems following the stroke and now have a pacemaker.I also have Chronic Fatigue Syndrome, osteo-arthritis (knee replacement last year and hip replacement to come), diabetes and an underactive thyroid. I look well and seeing me at events or out for a meal with friends people think I look really well.If I say I’m fatigued I can tell most people think “Oh, we’re all fatigued” - it’s very difficult to describe my range of vague symptoms and, while good friends are very understanding when I need to cancel arrangements, I don’t think anyone, including medical people, really understand without experiencing it for themselves. To all who have shared their experiences here thank you, and I honour your courage. Ann 

Sorry not all doctors see your hidden disabilities , they often dont refer you you for any help , well thats in my case , hopefully my new GP will see all the disabilities and send me to much needed specialists , as I  say some arent worth a pinch of salt , you complain to them and they turn a deaf ear , luckily I finally got out of a nursing home situation after years of complaining to Ndis , lucky its election time , they finally help .

I really relate to this post. I had a left parietal stroke, at 38, 6 days after the birth of my daughter 2 years ago. I lost my speech (aphasia), have right side weakness, sensation issues, and issues with my hand etc. I really put the hard yards in with rehab and my recovery has been really great and I’m thankful. However, fatigue plagues me and I have hidden  concentration, attention, communication issues which has meant to haven’t been able to return to work as yet. People assume that I’m tired because I’m a solo mum for a 2 year old, and think I must be completely recovered because I don’t have noticeable physical impairments - and because my speech and communication issues are fairly hidden now. I have support from the NDIS which has been life changing for me and I’m in constant fear that I’ll lose it because I “look so good”. I’m grateful for my recovery but living with invisible disabilities can be hard. 

Interesting topic. To any one the doesn't know me, I look that I have no disabilities at all, until I speak or show my lack of balance and dexterity. My stroke is 4 years ago while in hospital basically a result of septic shock affecting my brain stem the diagnoses is still a bit ??? According to MRI's I'm fine. Anyway, my main problem is speech so early doors people would assume intellectual disability. Over time I have improved to the extent that I have learned to use my communication problems to my advantage, I come out and say I have trouble talking and folks really seem more respectful and listen.

Luke.