Invisible disabilitys — Scope | Disability forum

Invisible disabilitys

bevt2017 Member Posts: 324 Pioneering
Hi everyone.
I wasn't born with my disabilitys.
Im 44 years old, and I was diagnosed with being profoundly deaf in 2016.
I do have other disabilities i.e- tinnitus, sweet's syndrone, phyoderma gangrosium, non specific vasculitis, pheriheral neuropathy, vertigo, deppression, anxiety, stress, and panic attacks.
Non of which are visible.
I try and think about how other people see me, and make excuses for there ignorance.
Not only with the general public, but with doctors aswell.
When I had an MRI scan to find out if I had a Tumour. The doctor refused to write down the results, because there was to much to discuss. I was made to sit in a corner of the room while they had a conversation about me. I was so angry and upset. I had to wait till I got home, so my husband could write it down for me. I have sat looking at the back of doctors heads, while they discuss my case with my husband. Not all my doctors are like that, and some do write everything down for me. 
my husband took me out for the day in my wheelchair. When some women started screaming at him. All I could do was sit there, with everyone in the shop starring at me. He told me all he said was if he could get by. She then gave him a horrible look, so he appologised. Then she started shouting at him. I was so humiliated, and scared to the point I broke down crying in the shop. I didn't go out for a long while after that.
I get stared at a lot when I'm out. I know people are judging me because of the way I look. I shouldn't have to appologise all the time, because I'm deaf and have other medical problems.
It' a struggle everyday for me and my family, without dealing with ignorant people.


  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    The user and all related content has been deleted.
  • Stargazerforest
    Stargazerforest Member Posts: 3 Listener
    I too was not born disabled. My first invisible disability started late teens.... depression. Ive been on and off depressed for years before I now remain permanently on the pills to help. In my teen years I also developed a more visible issue... migraines. As the years move on this gets worse and now I get them a minimum of once a month to sometimes half a month suffering. Still company doesnt seem to realise how hard even on the pills it can be to get up in the morning and they have now told me off for being 5/10 mins late several times.

    Despite telling company I suffered from these when I started I have been pulled up on all the times I had to call in sick as light was too Much or sound or unable to stand straight because of the pain or vomitting. It's not like I drink or smoke or do anything knowingly to cause them. They are hormonal and I have pcos so my hormones some months are everywhere so more migraines. 

    Then when I was 30 I began to develop hidden issue 3... arthritis in my hips. When its super bad I struggle to move and again it slows me in the morning and it becomes visible, however it's invisible when it's not at it's worst.I cant remember the last time I was not in pain even a.little since my arthritis began. People at work laugh and comment about my strange mice I supply to help my wrist arms and fingers (yes I supply my own mouse for work since they only supply standard mice) when nee office was built they put us on the first floor with no lift (lift has been put in since knocking walls between buildings but of.course they didnt take into consideration the fact they have someone with arthritic hips. 

    With all my hidden issues I feel like a thorn in someone's side and I hate constantly being told of for lateness of sickness. I mean they should realise how much effort it takes.just to.come in in a morning. 

    The invisible illness thing is not something I want to remind them of completely but seems workplaces just dont get it.

    And as for people.... well if someone isnt experiencing hidden issues themselves they just don't understand. They try to be empathic saying I get that sometimes, have you tried x,y,z. A friend of mine asked my husband how he copes with me being so changeable as he didnt understand. My husband gets it and is super supportive but it is hard.

    I miss my horse riding, I miss my skiing, I miss the life I used to have. I idea how to move forward or where to. I feel stagnant and misunderstood frequently. 

    Even doc.looked at me as if I was crazy when I asked if.I had arthritis. The xray proved it amd even then im told Im too young to help. 

    How can we change the perception of the world? I dont know. I feel for everyone here.
  • bevt2017
    bevt2017 Member Posts: 324 Pioneering
    Hi @DannyMoore
    I do agree about the starring, they should look away, or at least smile. 
    My husband says I'm too sensitive, and people don't look as much as I say they do. (I'm paranoid).
    I think even disabled people have been ignorant one time or another.(myself included). So I do try not to judge, and make excuses for their negative behavier.
    Your right I do think that people assume, we all expect hand outs. DWP is broken, it doesn't work.
    I went through hell with them. Assesments, court appeals, letters of complaints ect. Only recently was i awarded P.I.P since June 2016. I was asked to do an interview yesterday at my home. About P.I.P. For a TV programme (I can't mention).
    But it was cancelled by them the very last minute.
    The system needs to be changed, and people's perceptions of disabled people.

  • bevt2017
    bevt2017 Member Posts: 324 Pioneering
    Hi @Stargazerforest
    I'm so sorry to hear your going through a difficult time. 
    Iv'e had depression on and off since I was 11 years old. So I know exactly what your going through.
    I don't know if your having any councilling? But it is something you should discuss with your doctor.
    My husband didn't really know about depression. And we would end up arguing about me going on medication. He just didn't understand. But now he's very supportive.
    Have you had a face to face with your boss. To explain your medical issues and your needs?.
    Some people just need to understand, that were not all perfect. and do need support from the work place and are colleges.
    You sound like an amazing person.
    And i wish you all the best
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    The user and all related content has been deleted.
  • Stargazerforest
    Stargazerforest Member Posts: 3 Listener
    @bevt2017 thanks for your support. My husband has come to understand through his own depression and he too is super supportive now which I am grateful for.

    I've tried to explain to company but they tell me to go to doctors and find a resolution. I did tell them what docs have said and boss has said "do whatever you have get here on time." 

    I feel I am constantly fighting the world. I am lucky however to have friends and a husband that understands and doesn't walk around saying they know how I feel when they have not gone through it. 

    I plod on. Hoping next.visit to docs will be more fruitful as this cold weather is really.starting to.get to my joints and we are only starting winter :(