Do you talk to others about your condition?
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?
HI CatsAccount! You never need to apologize for writing a long comment; we are here for whatever you need!
I know you mentioned sometimes you receive negative reactions when advocating about RA. I think part of that is par for course. Especially when some people don't understand or aren't in the frame of mind to listen.
But from what you've wrote, it sounds like you have a lot of wisdom to share that others DO appreciate! Like you said, having RA at a younger age gives you a fresh perspective many others don't have.
By advocating for yourself and helping to educate others about RA, you're not only making people more informed about the full scope of RA but you are also putting a face to what RA can be - as many people who don't have RA might not picture someone who is 32 as a potential candidate for RA. So you're expanding their worldview.
Advocating for RA isn't always comfortable, but it's valuable. And it sounds like it's something that brings you fulfillment too! Which is great.
One of our community advocates Kelly wrote a piece that has similar vibes to your question - as she speaks about her experience of advocating for herself and the RA condition as a whole. You can read it here: https://rheumatoidarthritis.net/living/where-would-i-be-without-self-advocacy/
Thanks for sharing your question and I'm sure you'll get responses from other community members too!
-Reggie (RheumatoidArthritis.net Team Member)
Hi CatsAccount. You are not alone in struggling to figure out what the balance is on how much to share with others about RA. I tend to think it depends on the individual and whatever they are comfortable with. It can even vary depending on circumstances and mood.
I happen to be the husband of Kelly Mack, the author of the article on self advocacy that Reggie shared the link to. On the question of how much to share I can tell you that Kelly, like you, wants to advocate, educate, or just share about her life, but has learned that the balance isn't easy. She wrote this article on what to tell others, which I think you may relate to: https://rheumatoidarthritis.net/living/what-tell/.
There also may be times when one doesn't want to educate or talk about RA and that is completely understandable. Kelly wrote a couple of articles that I feel apply. She wrote this one on sometimes feeling like not being that teachable moment: https://rheumatoidarthritis.net/living/talk-children-disability/. In addition, another contributor, Leslie, wrote this one on how sometimes educating people can be exhausting: https://rheumatoidarthritis.net/living/educating-people-exhausting/. Other times you just may want to be able to hold normal conversations and not talk about RA - Kelly wrote about that here: https://rheumatoidarthritis.net/living/importance-of-normal-conversations/.
So the short answer (I know - way too late), is that how much to share is truly up to you and what you are comfortable with in the moment. There is only so much you can do to control the thoughts and reactions of others and if the truth makes someone uncomfortable that can sometimes be o.k. too - it may be what drives better understanding and more advocacy on behalf of RA. Wishing you the best and know that this community is here for you. Richard (RheumatoidArthritis.net Team)Thank You for the articles, I have some reading tomorrow for sure!
Hi! I share if people are curious to know! If I feel someone is not going to listen or be interested, then I don’t waste my energy. If they are people that I’m close to, then I will try to press the issue of educating them more than I would for a person I met on the street!
