Talking to able-bodied people about disabilities
Hi everyone, I’m new here!
I‘ve just turned 22 and every birthday is hard because 2 days before my 16th birthday I was diagnosed with JI Arthritis and fibromyalgia. My grandmother has RA and my pain is moderate-severe so I assume I’ll have this for the rest of my life. My neck , hands and knees are the worst. Neck is unbearable.
From 16-20 I didn’t accept this disease. I didn’t acknowledge it, I feared methotrexate and still do. Im sure I’ve developed a phobia of medication because in 2015 I ended up in hospital severely unwell with a viral infection and had no white blood cells left because I was given more methotrexate than my body could handle. I’m currently not taking it but I know I need to eventually (sooner than later)
I’ve struggled with my mental health since I was 13 but the diagnosis has pushed me near to the edge countless times. I still can’t process that I will feel like this for the rest of my living days. I’ve started to read some peoples posts on here and whilst I can relate, I still can’t find peace with it all. It’s been 6 years and I’ve only started talking, admitting and researching this disease in the last 2. My in-denial and hatred for my diagnosis has been a serious problem because it effects me in multiple ways. I don’t feel sorry for myself or look for pity, but I believe that not having any friends or people my age that I can relate to has not only ruined my self esteem but also makes me feel isolated and stressed.
I have never had a conversation with anyone who has arthritis other than my Nan. That’s how isolated I have made myself and therefore am generally only surrounded by able-bodied people who unfortunately, share their ignorance through their words and actions towards people like us.
But it is undoubtedly hard to not feel like the universe is taking you for a ride when you feel like a crippled 90 year old in a 20 year olds body who looks like she could go gym 6 days a week. I find that being a woman also makes this journey worse because society already seems to believe we don’t feel as much pain as men, that we are hypochondriacs and the way we react to a bee-sting should be of the same reaction as chronic pain that we feel 24/7. Before 2 years ago I wouldn’t speak to able-bodied people about disabilities because their response was too upsetting for me to hear. I find that I get quite bitter or unbothered when someone is telling me how bad their life is when they are wealthy, healthy and are theoretically the root of their own issues. I find it hard to connect with people but it’s because all of these people I’m talking to are ABLE-BODIED!