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We want to hear from you: please tell us about your experience of the online community.

Accepting your disability: how?

Rami

Hi all,

I'm a 27 year-old lady with a mild form of spastic cerebral palsy. As I do not face any major physical challenges (I go to gym, can even hike on relatively easy trails, don't experience pain and do not use walking aids), I still have some issues with my gait and balance (cannot ride a bicycle or do activities like dancing where you need properly coordinated movements). However, most people from the "outside" and not familiar ith dissabilities think I just have a limp, which is partially true, so I was able to reject the "disabled" label for my whole life.

As a kkid, I only had able-bodied friends and never spoke to anyone about my condition. My mum always wanted me to join some organizations and connect to people with similar challenges (mine were much more psychological than physical). However, I would get extremely angry and would get terrified at that thought. I've been (and I guess still am) im a very strong denial regarding my disability. I was never able to tell someone, for example, the real reaon I couldn't ride a bike. I would thik of some general excuse and laugh it off, feeling broken inside. I would also get super offended when there was a minimal indication of different treatment to me in comparison to the kids my age (for example, if an aunt would offer me a hand while climbing the stairs, I would get extremely offended and stop talking), although these actions were just a normal, decent help in my situation. However, I just couldn't accept other kids were not as protected as I was, in a sense. My coping mechanis was to convince myself that I was "normal" and pretend I didn't understand why the heck they were offering help.

I am still denying the undeniable. I would do anything for people not to notice my dissability, sometimes making ridicuous decisions. For example, I deleted all my online dating profiles after going on a few dates, because it was too hard to think that "this person will notice how I walk and will never want to meet me again.". So, this is affecting my life, as I'm not giving myself the opportunities I could.

How did you accept you and your dissability? Was there anything specific that helped you? Have any of you tried therapy (this is something I'm considering)? I'm not depressed or anything, I just feel like I've been living in denial for too long, and I would give whatever it takes to just accept myself and be confortable in my own skin.

Thanks a lot for sharing any tips and experiences!

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Comments

Rami

Apologies for the typos, have been writing quite fast.

pollyanna1052

Hi Rami, mmm, an interesting post.

I could be wrong with any of what I`m going to say, as I have a totally different disability to you...so I can`t speak as someone with CP....forgive me if I am way off the mark....

As your disability isnt very obvious, people would treat you as an equal..in games such as running about etc.....is that right? Has your condition progressed as you have got older or not?

I became disabled age 45, so I did have a lot of adjusting to do. I accepted a wheelchair, as trying to hobble along and having serious falls, became dangerous...other folk I talk to have not seen the use of a wheelchair the way I have..I kind of welcomed it!

Being in a chair lets others immediately see me as disabled, so I have little explaining to do...maybe that`s easier than it is for you.

Joining a support group helped me..yes, it can give you a frightening insight into what MAY happen...but not necessarily of course.

Acceptance of a disability is a hard one...as years go by I find I am getting angrier with it than I used to be. Dunno why really!

Has this helped at all?

Adrian_Scope

Welcome to the community @Rami. This is a really interesting topic and I hope some of our members will be able to relate and talk about it with you.

deb74

Hi Rami. I m the same! I have spina bifida, scoliosis and hydrocephalus. No wheelchair so naturally people can not see my disabilities. I didn't tell people for years. I never told anybody at school. So when I was at school I was seen as thick because I struggled academically because of the hydrocephalus and like you I have problems with my balance and co-ordination I can't ride a bike or catch a ball. My situation was not helped by my parents who never talked to me about it. I was always different to other people and knew I had these problems but didn't realise why I couldn't do things other people did. I decided a few years ago to do some research into my disabilities and suddenly things started to make sense. I realised why I couldn't do certain things. I still don't talk about it much. Most people wouldn't understand anyway. I have walked out of loads of jobs because I couldn't cope. I now work for myself so if I make mistakes it doesn't matter as I have no-one to answer to.

April2018mom

My son is now almost 3 years old. Over the years I’ve felt guilt for being a working parent but I really do need the money. I find that online support groups are really useful. On bad days they have been my sounding board. I used to keep a diary in the first year post diagnosis but I have not updated it in a while. Find a support network and join.
Advocate for your child. In the beginning I did a lot of research on my son’s condition but I stopped doing that when he was 6 months old. Time helps definitely. When my son was better, I went back to work part time as a crew scheduler for Delta Airlines. Talk with your partner.

Birdsnbees

Accepting that there is a reason for everything helps. There's a plan going on and whilst something isn't great, it opens a door to something else

Chloe_Alumni

Thank you for sharing this @Rami and I hope other people's experiences have been helpful.

dolfrog

Hi @Rami ,

I knew from about 5 years of age that I was different from others, when I had m first experiences in our education system, back in the late 1950s early 1960s.
During my teens I became the victim of bullies and many others who did not understand thatI was different, and did not understand the nature of my differences from others.
My employment history would now be described as disability discrimination in the work place for most of my career, and even more so when applying for jobs.
It was only when our sons were identified as being dyslexic and diagnosed as having Auditory Processing Disorder (which is the main underlying cognitive cause of the developmental dyslexia symptom) That i found out the nature of my complex sound processing disability.
The key test for me during my Auditory Processing Disorder assessment/diagnosis was the Random Gap Detection Test, which attempts to measure the size of gap between sounds your brain is able to process. When i did the test back in 2003 The test did not include a gap between sounds large enough for me to process. This explained why i have problems with those who for me aretalking too fast (which for me sounds like one continuous noise) and also explained my dyslexia symptom as I am not cognitively able to use phonics (not able to process the gaps between the sounds that the letters in a word represent) nor able to phonetically sound out new words from text.
I also have a poor auditory memory, and the coping strategies I have to run to work around my limitations can over run the limited working memory capacity we humans have. Which is why I have word recall issues when talking to others or writing.

So accepting and understanding the complex issues that are my disabillty has explained my differences from others, my limitations, and more importantly it has also explained the alternative compensating skills and abilities I have developed and use to worrk around my limitations. It also helps me avoid situations where my limitations may be a problem with others lack of understanding and lack of accommodations

Rami

Thanks each and everyone of you for sharing your insights and stories! I'm still on my way towards "mentally" accepting my disability and stopping being ashamed of it. Hopefully we'll all get there one day!

Chloe_Alumni

Thank you for bringing this up @Rami! I hope you are doing okay and please do let us know if we can do anything to help.