What the community say about living with hidden disability

Diana
Diana on Tuesday, December 15 2020
7 Comments

Many of the challenges that people face after stroke, including fatigue, memory loss, hearing loss and 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.

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Adele 

This is so true. For the most part I don’t want people to know. There are times I wish people did at least know how much effort goes into both the physical and mental accomplishments that others take for granted though. While I never use my stroke as an excuse, some real understanding and patience would go a long way. I often feel as though I lost a version of myself after my stroke. The intelligent, strong me. šŸ˜¢

Charlie 

I know the feeling. I had a stroke in May of 2019. I've made great strides. No more walker or cane. I've tried to explain it to my friends, but they only see me as healthy. They don't see the weakness in my legs, the fatigue and shortness of breath, the struggle to keep my balance 90% of the time, the speech problems, the constant annoying muscle spasms in the leg and arm affected, the super sensitive feeling in my foot affected, the memory loss, the feelings of helplessness.

One day I'm working on a farm caring for the animals and such and unloading trucks at a local retailer. Fending for myself. Taking care of me and my dog like always. The next I'm in the hospital unable to even move my right arm & leg and my face drooping. Slurring every word like a drunk and I don't drink alcohol at all.

Sarah 

My five year old suffered a pontine stroke almost 3 months ago. She’s made tremendous gains. It’s hard for others who don’t interact with her regularly to grasp her experience when she looks “fine” to them.

Priim

Nearly 1 Years after stroke I'm not like myself .I feel other person when I see myself in the mirror. It really hard suddenly my life it change

I hope one day I can back normal person like before.šŸ˜­

 

John 

All so very true šŸ‘

Kristy 

Totally agree

Nicole

100%

7 Responses
Avaniterg avatar
Avaniterg

I very much agree with this one. This hits me hard.

Diana avatar
Diana

Hi Avaniterg,

You're definitely not alone there.

 

What are you battleing against?

 

Diana   

PsychePsocid avatar
PsychePsocid

The Sadness of reality is that when It is done, It will never going back again.

Re-Mapping the Page.
Avaniterg avatar
Avaniterg

Hello Diana, thanks for asking me. I know the feeling coz I’ve been there. Thank God I’m okay now. 

 

Yvonne Russell avatar
Yvonne Russell

I understand fully it’s hard sometimes to deal with other people’s comments when you know how hard you have worked to get to where you are today. 
at Christmas a very long term friend asked me if I would like some garlic bread, I said no thanks I can’t eat it due to swallowing difficulties and allergies I now have from the stroke. 
her comment back was don’t be so stupid get over it and stop fixating on the problems the stroke did to you, you don’t even look like you had a stroke are you sure you did.

I just sat there at first stunned and in shock her husband went off at her my husband was about to also when I stood up and said to her. 
Yes I am positive I had a stroke actually it was 2 strokes in 1 and if it hadn’t been that my husband spotted the difference in me and I was already in hospital he was able to alert the medical staff I would not be here today he saved my life. As to getting over it I live with it everyday it’s not something that you can just turn on or off as you please. You can’t see the damage it’s done because majority of the damage now is internal and in the brain. 
so please don’t ever tell me to get over it. I then walked away slowly trying not to drag my right ankle which plays up when I am tired or emotional.

Thankyou got this post like others who have had strokes it’s not easy some days to keep going 

Avaniterg avatar
Avaniterg

There are really people who don’t know how to respect people's feelings. They don’t know this phrase “Even if it does not mean anything to you, it could mean everything to them.” It’s really true that insensitive people don’t care at all.

PsychePsocid avatar
PsychePsocid

That is why we need to be kind and nice to everybody because we really don't know what battles they are fighting for!

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