What is the Point? — Scope | Disability forum
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What is the Point?

HayleyGeek Member Posts: 11 Listener
I have recently moved into my mother and father in laws home with my partner due to a landlord issue. However, his father in law struggles to understand my illnesses as they are invisible. I have sat down and discussed them at length to help them understand. Now I'm being asked to explain it to other family members as "they know people with other conditions that work, and dont want them to think your using it as an excuse'. 

I have fibromyalgia on the very severe end, as we know it's a sliding scale. Meaning that over the last year since diagnosis and being 31 a d previously a nature lover, hiker and outdoor enthusiast, also a hard worker. I am now using a stick, in pain every day, struggling with CFS also so cant walk to the loo or speak on some days. I use a wheelchair for longer distances like a trip to Tesco which is very rare for me. I cant stand for longer than ten minutes without having an acid like feeling running down my spine. I've been told to look out for RA also as my RF is off the charts high. I'm also being tested for ibd as I have bowel inflammation and incontinence. Alongside I have severe anxiety and moderate depressive disorder. My mother has Lupus. 

I just dint know how to explain it anymore. Why do people think I'm just lazy?. I would love nothing more than to be in work. But cooking a meal wipes me out for the entire rest of the day. Some days when everyone's at work, if I cant walk I just dont eat. My father in law is retired so he is at home every day also. I fill my day with **** things like reading, TV, gaming, arts and crafts. I'm also starting a OU degree in October to fill time. I cant use my wheelchair alone as I dont have the strength. I also dont have access to transport. 
I'm so tired. I've tried every medication available and nothing works. 

Why am I being constantly compared to others? Why is if t some with fibro live normal lives in relativity to me? I have tried to find therapists but, the NHS wont help me because I cant guarantee then a weekly appointment slot due to my illnesses, as it fluctuates daily. They wont accept this so I've been removed from their mental health service. Private therapists I've contacted are too busy to take on new clients. I'm really at the end now. Yet I'm still having to prove that I am ill to family who only see me on days when in putting on a face. They dint see me on all fours screaming in pain a couple hours after the family meal together. 

What is the point anymore?


  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Hi @HayleyGeek and welcome

    Invisible conditions are hard to explain and even harder to understand. You could try connecting your Father in Law with this site so he can see how many people are in a similar position, or there is plenty of info on line about Fibro, try getting a printout for the family to read
    Be all you can be, make  every day count. Namaste
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Welcome to the community @HayleyGeek
    I am sure that so many of our members with invisible impairments know exactly where you are coming from and how tough it can be. I have Ulcerative Colitis and a permanent ostomy bag, I struggle with pain and fatigue but because you cant see any of this from looking at me, I know I have felt judged when I am too sore or tired to do anything.

    Can your partner speak to his parents? Really they need to know that their questioning of you is making you feel worse and that they need to be more accepting of you and your impairments whether they understand it or not.

    I am sorry you are having a tough time but I am pleased you have joined us here on the community.

    Senior online community officer
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Hello @HayleyGeek, I’m really sorry to read this. As Sam said above, I think it’s important for your partner to try and advocate on your behalf here. Invisible impairments can be difficult to understand for those without lived experience, but that doesn’t mean you should have to justify them either.

    Community Manager

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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    How are you doing @HayleyGeek ?
    Senior online community officer
  • HayleyGeek
    HayleyGeek Member Posts: 11 Listener
    Hi. Thanks all.for your responses. It isnt getting any better. An example is that we asked his dad for privacy for an hour today due to a counsillor coming over for an assessment. Of course he stomps on through mid assessment which  I dont think impressed the assessor. I'm so low at the moment and the assessor doesnt know how I'm.coping with it all. I need out of the house with no financing to do so or anywhere to go. 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @HayleyGeek welcome to the community, I am so sorry to hear what has been happening. Are you able to contact your local CAB? They can give housing and benefits advice :)
    Disability Gamechanger - 2019
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Invisible conditions are completely misunderstood by all but a few healthy people. I too used to get constant comparisons even among other disabled. Almost everyone assumes that because I have a spinal condition I must suffer back pain when most of the pain is from the hips down or in the neck and shoulders. The lower body pain is now so severe that I am virtually unable to walk but still I look normal when sitting or standing still. Despite explanation after explanation even my children don't really understand, let alone outsiders.

    All you can do is keep the explanation simple and short and if they really don't get it then ignore them.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


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