I have a list of chronic illnesses which I have been diagnosed with. None have a cure and they will now be in my life to some degree in one way or another for the rest of my life.
The definition of chronic illness goes as follows:
"Chronic conditions are those which in most cases cannot be cured, only controlled, and are often life-long and limiting in terms of quality of life." - NHS Wales
Every moment of my life and the decisions I make involve taking my illnesses into consideration and they have redefined how I see myself and how the world sees me, both positively and negatively.
Now I move onto the word 'disabled' - dis abled. How you are unable to do something. Here is the dictionary definition of disabled:
According to the Government...
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
- Definition of disability under the Equality Act 2010, GOV.UK
So, by definition under law, I am 'disabled'.
The journey to disability
When I first became unwell it was just a few symptoms which gradually worsened and grew in number but I just put them aside and hoped that it would just be a temporary thing.
For a number of years my symptoms were classed as 'medically unexplained' though certain diagnosis' where mentioned. I did have other illnesses such as asthma, allergies and a spinal curvature which I've has since I was a child but I never saw them as an illness that I had - they where just there.
Part of beginning my journey into the world of chronic illness was (a) accepting my now situation with my symptoms and (b) becoming part of the chronic illness community and being around others with the same symptoms as me made me see that I was chronically ill. This was also coupled with the acceptance of my health situation and knowing that it wasn't going away any time soon.
Getting my diagnosis' helped me a lot. Finally I knew what was wrong with me and non of it was me having done something wrong. Grief then struck in even more fully knowing that my illnesses was something that I was going to have to live with and get used to and that I'd have to learn how to live with them. It was then that I began to class myself as 'chronically ill'.
It took me a little longer to call myself 'disabled' and this was a gradual process. I was dis-abled by my symptoms and illnesses; I was less able to do certain things.
What makes a person 'disabled'?
We've already explored the definition of disability under the Equality Act 2010, but who decides if someone is 'disabled'.
Is it the government when they decide you're entitled to be in receipt of disability benefits such as PIP? - Personal Independence Payment (the new name for Disability Living Allowance), the money to help you cover some of the 'extra costs' that come when you have a disability.
Or is it your local council when they deem you to be entitled to a Blue Badge so you can park in disabled parking bays or issue you with a Disabled Bus Pass? (Both often decided on the points you receive on you PIP entitlement though with Blue Badges new changes have been brought in to widen out who can be in receipt of one.
Calling myself disabled
This came as a gradual thing. I started to feel more dis-abled and restricted in an abled society especially when I'm out in my wheelchair. I also found myself needing to use disabled/accessible toilets and changing rooms and I needed someone with me whenever I left the house both.
Though I'd left the chronic illness community which I felt was more of a negative environment that a positive and supportive one I felt more surrounded disability; maybe unconsciously trying to find people like me. I followed certain disabled people on Instagram and watched disabled YouTubers.
I felt comfortable with the idea of disability and seeing myself as disabled and having disabilities.
I now call my illnesses 'disabilities' as that's how I see them as that is how they affect me in life. I also find that referring to myself as disabled or letting others know that I'm disabled helps as it prepares them and it means that accommodations for my needs can be made.
I now feel happy and confident to call myself disabled.
