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JHS Getting worse and Nobody Understands

Posted , 6 users are following.

StarryNight95
StarryNight95

Hi

I was diagnosed with Chronic Joint Hypermobility Syndrome as a child and in recent years it has been getting progressively harder to cope with. 

I struggled with my education to the extent that I had to drop out of college and have attempted to work many times but have always found that my joints can not cope with the work. I have just lost another job due to my JHS. 

I feel like nobody understands - not my friends and not my family. 

Is anybody else in my situation? Do you have any advice - Has anybody tried to apply for ESA with this condition?

Any kind words or advice would help confused

 

2 likes, 3 replies

3 Replies

  • erykah71
    erykah71 StarryNight95

    Posted

    Hi Starry,

    Sorry to hear you are having a bad time, JHS is an awful condition to live with and very hard to deal with, especially the fall out it creates with work, daily living, socialising etc. 

    I had to give up work a few months ago and whilst I knew it was inevitable it has still caused great upset.

    I am very lucky in that my family understand and help. But despite this they do not appreciate the severity of it. I just do what I can and try not to feel guilty about the things I can't. Do not over exert yourself and suffer just because you're not understood. I've been there and it just makes everything worse.

    On the bright side, I claim ESA and was placed in the support group without any problems. I also get PIP, but am currently appealing as I didn't get anything for mobility, but I know of others who have enhanced for both mobility and daily living.

    If you have facebook there are a few good closed groups on there which have people in the same boat and is good for advice and having a moan.

    Anyway, I hope things start looking up, but just do what you need to do, and don't push yourself too far for the sake of others

    Ery x 

  • nancy724
    nancy724 StarryNight95

    Posted

    Hi there, well...you've made me cry because I'm thinking about that doctor last week that told me I had too many ailments for any doc to bother to deal with and that i was a DEAD END. Well honey, I care about you and for as long as I have left to live, I will...and I promise you, my family will continue to care about you and you if you'd like them to after that. Yes, I absolutely do know what it is to feel like nothing...or even like a burden with nothing offer and heck...I have 3 degrees (no not all in an actual university--computers have come a long way and dont care about how many classes you take at a time lol!)...but I'm bed bound now; been so for 3 years now; however I was blessed with a great brain so I'm a Disabled RN who's happy to give advice to anyone who asks or needs any. Oh, I have both hypermobility and vascular type by the way. May I ask where you are? I'm in Northern VA. Are you on any of the Facebook Support Groups? There are 7 I think. I am, but only for advice giving. I guess I just don't want to push my lonliness and fear? on anyone. I will tell you something great, that I pray will make your day. Firstly, my name is Nancy and my # is 571 488 5438. As I also have POTS & MCAS I have triple whammy the insomnia so call me anytime! (and I mean that, ANY TIME you need) Secondly, I've been blessed with some very caring family members who I know would be there for you too! My mom's name is Ethel and if you'd like, I could give you her number too so you get a mom's prespective which can be more helpful than a friends' like mine (yes I am now your friend, like it or not...although my brother might tell you to say not lol) Did we get a smile? Anyway, if you feel odd callling her than I can give her your number if you're comfortable giving it out and I know she'll call you pretty quickly. Well, hope I didn't bore you terribly but gave you some hope because you definitely have lots with us here!!! cheesygrin

    • BoneAmi
      BoneAmi nancy724

      Posted

      You're just the sweetest thing. My heart goes out to both of you. I've been told that my joints are hypermobile, but it was during a doctor's visit for something else. I'm wondering if that is what is causiing me so much grief. Do you mind telling me how old you are? You mentioned you're an RN. Is your prognosis such that you will be able to get back to work at some point. I will say a prayer for you. I'm in Texas.

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