Hello, I'm Eirloula - thoughts on invisible disabilities — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Hello, I'm Eirloula - thoughts on invisible disabilities

Eirloula Member Posts: 1 Listener

I've joined as I'm still feeling unsure about the term disabled. I have multiple health problems (EDS, POTS, Asthma, Psoriasis, IBS/IBD and I suspect fibromyalgia) that are invisible, they require daily medications and monitoring. I deal with chronic pain and fatigue almost every day (though I've not bothered seeing a doctor about that because there's not much they can do). Sometimes my conditions stop me in my tracks and I can't do as much as my peers, especially when on holiday! 

I always describe myself as someone who has chronic illnesses but I never say I'm disabled. I work and study part time and my uni classed even asthma as a disability. So I decided to inform them of my health issues and applied for DSA which I got a lot from that have been very helpful. Before I got my equipment, I was in a lot of pain when studying for a long time.

Because I'm working and studying, even though I find it difficult to balance that, rest and social activities (few and far between), I feel like I'm being almost fraudulent saying I'm disabled? Especially as I look young and healthy. I always think everyone has health problems and they're all dealing with something. But on occasion I've asked relatives how they feel and they say they're not in pain whilst I'm in agony.

I feel like it's a strong word that comes with associations by people and although I know it's unlikely, I'd hate for someone to say I'm using the term incorrectly to describe myself. Couldn't it be said that anyone with a health problem is automatically disabled?

Anyone else feel the same? I'd love to hear your thoughts.


  • MissMarple
    MissMarple Member Posts: 105 Courageous
    Hello and welcome to the community.
    In my opinion disability can be subjective in terms of having a diagnosis or a health problem does not necessarily has a significant negative impact on your life. People can surprisingly well adjust to very hard situations. I consider myself disabled because my illness prevents me from doing basic everyday stuff, I can't work, had to give up hobbies etc.
  • Ross_Scope
    Ross_Scope Posts: 4,955

    Scope community team

    Hello @Eirloula

    Welcome to the community, it's good to see you join and I hope the community will be a positive outlet for you.

    Calling themselves disabled is something that quite a few people can take time adjusting to for various reasons, such as a feeling that admitting they are disabled will make them seem weaker than others, or that they have associations with the term as you touched on there. Also, some people just may never feel comfortable with using that term, which is okay of course.

    At the end of the day you should refer to yourself in a way that makes you feel comfortable because that's the most important thing. There will always be others who will be of the opinion that a disabled person is using the term incorrectly, however those people are best either ignored or educated as to why that is not the case.

    Good to hear you found DSA to be helpful!
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Talk to our chatbot and give us feedback on the community.


Do you need advice on your energy costs?

Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.