Joints
hoto by Joyce McCown on Unsplash
Disability is hard to define.
Most people seem to identify disability as being visibly confined to a wheelchair or using some visible device to get by day to day.
I have an invisible disability, I have arthritis and fibromyalgia that make my joints swell and hurt or my muscles and nerves spasm and knot. This can vary massively day to day and most days there is no visible sign that I am disabled or chronically ill.
Disability is often viewed negatively. Most of society agrees that accommodations should be made for those who can’t walk or can’t see but so most of the world is geared towards those who are able. While basic accommodations are available in wheelchair ramps or elevators it isn’t universal and trying to get around in a city with its constant construction and traffic can be impossible or downright dangerous at times.
At my worst, so far my arthritis means exhaustion, pain, and hobbling up and down stairs, cursing as I fight to open doors or bottles, and dropping so many things. Thanks to my medication this is becoming more rare but it does mean that pain becomes a part of your life.
I was talking with someone about working from home and they kept poking fun at working at my desk pants less. I couldn’t explain that that isn’t an option for me. On bad days I can’t walk without shoes unless I am shuffling around like a crone.
Lately my back has become a problem. I can’t stand at the sink and do dishes without spasms and pain that forces me to take breaks. I was talking with my mother how has osteoarthritis and she suggested getting a stool. I’m 38 years old, I don’t want to have to use a stool to wash the dishes. I don’t want to sacrifice yet another thing to an accommodation for my illness.
I know a stool is something small and would probably help but in my head I should be able to stand for 30 minutes at the sink to do dishes.
When do you accept that you have to change your way of life for a disability?
I have been sick for 8 years now, on immunosuppressive medications for 6. I know I am not going to get better at this point. My joint damage is only going to get worse over time no matter how well my doctors and I manage my symptoms.
When do you accept that you are disabled and unable to continue life as you used to view it?
I am certain many people would argue that my life is changing not ending and I agree. Life is change. When it comes to disability and chronic illness that can mean watching others moving much faster then you are able and struggling to accept that the slower pace is all you can manage and be healthy.
The struggle is what do you accept and what do you fight for?