I know that not everyone feels comfortable talking about their health, but when I get the opportunity I’d like to educate people about my condition.
Rheumatoid arthritis is often misunderstood
All too often people hear rheumatoid arthritis and start telling you about arthritis they have in their knee from some activity. But that’s barely scraping the surface of pain
that goes through your entire body, drugs that compromise your immune system, brain fog
which is a huge hurdle for me because I am scary forgetful, fatigue and all the other complications of my illness.
It doesn’t help that I’m young
. I was diagnosed at 17 and I’m 32 now so even though I’m young I’ve been living with this disease for quite some time.
I’m on pretty aggressive treatments because I want longevity in my ability to work. I take cocktails of methotrexate
and Rituxan infusions (both drugs that were intended to treat cancer and have side effects) and I also developed neurological issues. I get ataxic and neuropathy and other neurological things.
Valuing RA advocacy
When I talk to people I talk about the mechanics of the disease and I find it rewarding when people who are newly diagnosed
come to me with questions and I can give them advice; especially about medical advocacy
and speaking up to your doctors when something is not working.
But I’ve also had some negative reactions from people. My godmother suggested that I should receive psychological counseling for depression. But I’m not depressed, not any more than anybody else. I actually think I handle things well, I’m not mad about my disease.
Getting to a good place mentally took me years especially starting my journey so young. I don’t mind if someone doesn’t wanna hear it it’s not like I talk to strangers but I like the idea of maybe expanding somebody’s understanding of chronic illness.
Sorry for the long text but I’d like to get some outside opinions on whether or not you guys will take the time to educate those around you and if you feel it’s healthy?