The Easter weekend is here!
Although I’m not that excited as I’m working both today and Monday because I’m all about the money and I’m not allowed chocolate cos my body continues to reject a growing number of foods. JOYOUS!
On Wednesday I was asked:
“What’s the one thing you want other people to know about living with arthritis?”
One thing? THE ONE THING? I have so many things I’m legitimately tempted to jot it all down in a novel.
Where does one even begin with that?
Turns out, I had no idea where to begin with that. So I threw it open to the wonderful internet to try to gauge what the most popular ‘one things’ were. Turns out, we all have thousands of things we want the world to know.
So, being someone with a total disregard for rules (sorry Police Officer Parents, it’s nothing personal) , I decided to narrow it down and submit 5 things.
So ladies and gentlemen, today I present to you:
The (simplified) 5 things I wish people knew about living with arthritis
- That arthritis doesn’t just affect old people. I was 27 when I developed and was diagnosed with Psoriatic Arthritis, which isn’t particularly young (e.g. infants can suffer from JIA) but I still had a hard time convincing those around me that yes it was arthritis and that no I wasn’t too young. If I had a pound for every time someone said, “Nah, you’re wrong, it’s not arthritis, you’re too young”, I’d be a millionaire.
- That there are numerous types of arthritis. My type, psoriatic, is not osteoarthritis, which tends to be what people think of first. It’s not wear and tear in my case, but autoimmune. This leads nicely in to point one as well, associating arthritis (especially osteo), with being something that only old people have.
- There is more to it than ‘just’ sore and swollen joints. Fatigue is a very real and very debilitating associated side effect, and can impact on every part of your life. Having to lie down out of exhaustion after doing something as ‘simple’ as brushing my teeth has happened to me.
- That people who live with arthritis look like everyone else. That you can’t tell just by looking at someone how much pain they may be suffering. The joys of having a relatively invisible illness!
- “But you were ok yesterday” is not something anybody with arthritis wants to hear. Sure I was ok yesterday, but since then I’ve flared up. A flare occurs when symptoms of a disease that has been present for a time suddenly worsen. I don’t know if or when I’m going to flare, there’s no rhyme or reason to why it happens. So thanks for noticing I was ok yesterday, now notice than I’m not ok today and let’s move on.
Now with the benefit of hindsight I wish I’d also mentioned how nothing I did caused this. “If you’d never drunk milk this wouldn’t have happened to you” is a personal fave, closely followed by “If you become vegan now, you can reverse it”.
Despite submitting the piece, I am still unsure what my number one thing is. So many different points link in to each other it’s hard to tell where one point ends and another begins. As I sadly continue to age I feel that the age point becomes less relevant to me (damn you the passing of time!) although at my time of diagnosis it was probably the biggest difficulty I faced when telling people.
So. What is the one thing you want to tell people about living with arthritis? How many thousands of things do you have to say!