Anyone have problems with feeling the... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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Anyone have problems with feeling they are not disabled enough? What do you do about it?

emilyhedgehog
emilyhedgehog

Hey everyone,

I have a bit of a worry and need to get it off my chest. I have EDS and like many of you guys here it was missed for ages, I got called a hypochondriac with too much access to google etc before I finally got my diagnosis. Then the doctors checked for other issues and found the connective tissue issues were kind of obvious if you knew where to look.

Anyway I am 24 and I live it at home, and due to my worsening health and the fact every stupid injury I had as a child catching up with me all at once, my mother (who probably has EDS herself and I would put money on it) has become my main carer.

This made me feel very depressed. I kept thinking to myself if I ever want to move out I can't really because I can't look after myself. The parent child relationship instead of the parents looking after the children till they can care for themselves has gone completely backwards in my case. I felt awful because although my mother didn't seem to get the full blast of EDS herself or it didn't affect her so badly till much later in life she has troubles herself and she can't keep doing all this for me and herself forever.

I was worrying about it one evening when I saw an advert on facebook for a service dog charity and followed it and they were about to open applications and work with people with Ehlers Danlos. So I applied and they picked out people to invite to the next stage which is applicant day to start the process to join their waiting list, at random with a computer and I got chosen.

One of the ladies who worked for the charity phoned me and asked a few questions and what was weird was she not only knew what EDS was she knew about the all the commodities that come along with it and asked me about that.

The applicant day is tomorrow. There is one thing worrying me. I looked on their website for case studies and everyone on the website was in a wheelchair.I don't use one right now. I mean I am looking at getting a mobility scooter and a hoist for my car because I can't lift anything heavier that a book without a shoulder popping out (thanks violin). But most of the time I limp round, either holding onto furniture in my house and office, like places I know well. Or I use my smart crutches. Its partly stubbornness and denial that I have not looked into it before but I am speaking to a therapist about that. I think maybe because I did swimming classes every week from age 7 to 16 and trampolined for hours a day in my garden, it strengthen my legs. I accidentally kicked my friend in the shin in year 8 and by the time we finished sixth form at 18 she still had a dent in her bone. Trampolining may have screwed up my spine and hips up but my thigh muscles are still good.

I have checked the application guidance 5 times and there was no mention of being a full time wheel chair user, it just said physical disability and over 18 and stuff about being able to afford the costs of dog etc.

Like many of you, I look healthy and fine like a normal 24 year old albeit with a bad leg due to my crutches, until I try and bend down or do anything and my colleagues call me jelly wrists for that reason. But I am absolutely terrified I will walk into that applicant talk with my crutches they will say I am sorry you aren't disabled enough we will have to withdraw your application.

Anyone else have that feeling of am I disabled enough? When using disabled bathrooms or seats or applying for benefits. I know logically that I am entitled to use some of these things and apply for other benefits and help but in my head I keep hearing the voice of you aren't disabled or you aren't bad enough to need it or get it they are people much worse than you. You should withdraw your application now and save yourself the embarrassment, because you're just a hypochondriac and the staff at the dog place will see through you instantly.

Thanks for reading if you got this far, I need to let that out. Its been bugging me for a while and the applicant day is tomorrow, wish me luck.

3 Replies
oldestnewest

Hello Emily

I know where you are coming from and understand your issue, been there myself, but I am older than you and I no longer care so much what other people think - you will get there too 😉

You say the woman you spoke to had some understanding of EDS, that sounds great! I am sure they also know that disabilities come in all forms and that being disabled doesn’t mean the same as being wheelchair bound - even though the logo for disabled is a wheelchair....

I wish you all the best with your companion dog and hope you get more independent - important for both you and your mum.

Hi Emily,

This will be a long reply, because basically you are describing our house! Only in this case I am the mother, and it is my son, who is 23, who is in your position.

First of all, yes, it is hard for us mums with EDS to care for our kids; I am in the same position as your mum, the EDS is catching up with me (now age 59, have lots of arthritis and 3 surgeries on my feet in the last 10 years). But that doesn't change how I feel about my son. I will always be there to care for him until I really can't physically, and then I will still be there psychologically supporting him. Its this funny thing called mother love! It isn't a chore, or a burden, and yes, there are days when I struggle, but I count myself really lucky that I have such a wonderful son still living with me when some of my friends have children that they never see, hear from rarely, or only briefly see now and again.

In fact I have had to point out to my son's father (he doesn't live with us but visits once a fortnight for the day) that at my son's age, he never bothered to even go back and visit his parents until I met him and made him!

In western culture we are expected to push our children away to make them 'independent' but most cultures don't do that, the children always live at home until they marry. If they don't marry they just always live at home. We live in a tiny rural village with loads of farms, and all the farming families and all the families who have lived here for generations have their grown up children living with them, sometimes three generations at a time. This is the natural order of things, moving out and not seeing parents all the time isn't.

So don't beat yourself up on this one. Work together with your family and figure out how to transition from a child parent relationship to an adult adult relationship. That's one where people act on their strengths to support each other.

As for feeling disabled, don't worry about that either. My son is disabled by his fatigue, and we have a wheelchair for long distances, but like you he uses aids to get around. He has a wicked cane, wooden with a brass handle! Goes well with his leather trench coat and top hat!

Like you he did a load of trampolining, and this was a Good Thing according to his physio. It kept his legs strong and developed his coordination. He was a water baby and we used to swim several times a week, but then the water got too cold and he had to rest between each length, so now we swim weekly at a hydrotherapy pool. So rather than think gee, I did all these things and they made me worse, think gee, I did some good things to keep my muscles strong and I would probably have been worse if I hadn't.

Go to your appointment with an open mind, don't compare yourself with others, we all have a mountain to climb, some of us have have higher mountains than others, and some of us need more equipment to climb the mountain than others, but each of us has our own unique mountain to climb.

And just one practical thing, has your mother registered as a carer with the GP surgery and the local carers organisation? It varies from area to area, some are helpful, others not, but it is worth her registering.

Say hi to your mum for me, and if it is okay I will tell my son that there is another family like ours!

Does EDS affect your every day?.. Yes. Does it prevent you from leading a normal life?...Yes. Does it stop you from doing things that people would not think twice about if they are healthy?... Yes. You have hear of the phrase that not all disabilities can be seen, and EDS is one of those. I have EDS and have done for years. It has affected my organs and that cannot be seen, but it sure as hell can be felt on a daily basis, or every time I eat or drink even the smallest morsel. You know how you feel day-by-day, and you know the struggles you have. Think of others like you, who have an illness that is partly invisible, but is certainly a major disability in your life. Some mental health issues can make people a crumbling wreck, seeking an end to their life, but the illness cannot be seen. Please don't feel afraid to not be disabled enough... just feel afraid that you have to live your life in the future with an illness that stifles enjoyment in day to day activities normal folk take for granted. And know, that you are not alone. The reason you choose not to have a wheelchair is that you are determined and have strong willpower. Maybe the other candidates don't have your strength or willpower, or are just too tired, having fought it for many years. Hold your head up high and just be yourself. you are obviously a tough cookie, I know because I know what it's like to live with EDS! Take care.

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