Am I Really Disabled?

By Anna Samson

2 min read

I am in my early twenties and people are often skeptical when I tell them that I am disabled. In their eyes, I am a young person and therefore deemed virtually indestructible. What they don't know is that the severity of my disability varies from day to day. Understanding this can be confounding, especially for those who don't believe I am disabled in the first place. Facing this disbelief every day eats away at a person and plants seeds of doubt.

When my symptoms are minimal, I question myself

When my symptoms are more manageable and I am able to do more, I feel like perhaps all those people are right. I question myself. I ask myself whether I am really disabled if I am able to do things by myself? Or my pain is better some days? Or I don't need to use my mobility aids?

Experiencing imposter syndrome when I am feeling better is very frustrating. I feel guilty or feel like I am lying. Through exploring disabled communities online, I have learned that this is a common feeling. Many people doubt their disability when their symptoms are better. While I wish so many didn't have to experience such pervasive doubt, it is comforting because I know I am not alone in my invisible illness experience.

Disability is different for every person

Sometimes, it is hard to remember that disability looks and feels different from person to person. It's also hard to remember that it doesn't matter how others see my disability because I live with AS every day and I know how it affects my life. While it would be nice to not have to fight to make my disability seen, it does not change the fact that I am disabled regardless. I am simply a disabled person trying to navigate my life.

Unfortunately, society is not designed to include disabled people. It does not recognize the complexities and varieties of disabilities that exist. People don't realize that there is no one way to be disabled. Every disability is valid, including mine. When I doubt whether I am truly disabled, I have to remind myself that this is just my internalized ableism talking, and I do not have to give in to it.

I have a disability and that is ok

When I talk about my disability, whether it be in person or online, I am not lying or doing it for attention. Nor am I faking being disabled for any perks or benefits. I have a disability and that is okay. Sometimes I feel better and sometimes I feel worse and this does not alter my being disabled. So, to answer the question posed earlier, yes, I really am disabled.

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Julie Vallortigara Moderator & Contributor
Hello <inline-mention username="Anna Samson" user-id="4164139"/> This is a really interesting reflection and important question you ask there. I used to question it a lot, and I think I came to a conclusion recently that I am disabled. I think reading articles about it and hearing from others people about how they define themselves and illnesses has helped me to see a bit more clearly where I sit with the definition of disability. I hear you when you say that disability can change from one person to the next. And I think this is what makes it harder to see clearly for ourselves. Maybe we are making it too personal and flexible in the way to define, frame and accept a disability for what it really is?! Earlier this year, I attended a workshop and one of the facilitators presented himself as a disabled person in the most straight forward and simple way that made a lot of sense to me. He said something like I have chronic condition that affects my life on a long term basis, and I am taking a treatment for it which helps me to keep my condition under control. He did say that this is following what is described in the Disability Act here in the UK. When I heard him presenting himself like this, it was then obvious that I fall into that category of people with disability, no question about it. I then went on checking the disability Act and I just want to share a bit with you here: 'You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.' What ‘substantial’ and ‘long-term’ mean ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed ‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection There are special rules about recurring or fluctuating conditions, eg arthritis. The Act states that, if an impairment has had a substantial adverse effect on a person’s ability to carry out normal day-to-day activities but that effect ceases, the substantial effect is treated as continuing if it is likely to recur. (In deciding whether a person has had a disability in the past, the question is whether a substantial adverse effect has in fact recurred.) Conditions with effects which recur only sporadically or for short periods can still qualify as impairments for the purposes of the Act, in respect of the meaning of ‘long-term’ So reading this, since I had to change things in my life to cope with my condition, to stop doing certain things, and learn to live differently on a daily basis with my condition, then I think I am disabled. And, in this act, the section clearly explains that fluctuations and recurrence of symptoms are included in the definition of disability, so with a dynamic condition including flares like ours, I would still fit under this act. I found it interesting to read this and reflect about it. I agree that the society is not designed to include disable people yet. And this might contribute to people like me wondering about whether they are disabled or not in the first place, maybe for the sake of wanting to fit in, shying away and avoiding to present themselves as disabled. I just think when I read this Disability Act we have in the UK that we have things in place to help us and I wonder how much this act talks to people and how useful it is to them. Sorry for the long post! I got carried away... Let me know you think. Take care, Julie. 
1. Anna Samson Moderator & Contributor
 <inline-mention username="Julie Vallortigara" user-id="2107984"/> This makes a lot of sense! It is really helpful to reframe how we view disability.
Rebecca C Moderator & Contributor
I absolutely question if I am disabled. It's like ... I can still walk, although slower and with a limp. Pelvis is feeling better with my infusion, but still painful. Neck is a disaster but able to move it. Enthesitis has calmed down so now able to lift my arms and move my fingers. So am I really disabled? Rebecca 
1. Anna Samson Moderator & Contributor
 <inline-mention username="Rebecca Cappello" user-id="2106882"/> When symptoms and their severity fluctuate it can be so hard not to feel like this. I completely understand what you mean!
James Hollens Moderator & Contributor
Hi <inline-mention username="Anna Samson" user-id="4164139"/> , This is a debate that I have had with myself in my head so many times! I think most of my doubts come from the fact that a lot of wider society basically assumes the only way someone is disabled is if they use a wheelchair or walking aid. The fact that I only sometimes have to use these things left me thinking - am I part time disabled? But at the end of the day I feel like there is no such thing as part time disabled as the days of me needing crutches or a wheelchair will no doubt continue to happen and there are so many other aspects of being disabled than just that. I definitely agree with you that I am disabled, and that it is perfectly OK and I shouldn't feel like an imposter on the days when I am feeling good! Thanks for a really interesting and inspiring read! Wishing you well, James (Community Member)
1. Anna Samson Moderator & Contributor
 <inline-mention username="James Hollens" user-id="2107776"/> I love how you put it! It can feel like part-time disability which can add to the confusion and guilt felt as a disabled person

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