Hi, I'm New
Good evening all, Im new to this forum and newly diagnosed with RA. I was diagnosed with fibromyalgia many years ago so I am no stranger to dealing with chronic pain. The majority of the time chronic pain or knowing that I have a chronic condition does not bother or get me down. However, what does bother is having to explain it to other people or other people knowing in general so I try not to tell anyone until I absolutely have to. Most of the time people just look at me like I'm crazy or say that I'm just making excuses to cover something that didnt happen or they will say you just need to diet and exercise. I know diet, exercise, and taking care of yourself in general is important for anyone whether you have a chronic illness or not, but it is also not a magic pill. One thing that bothers me the most is that I cant even talk to my own family about it. They often just tell me what I should be doing to make myself better and that I just put no effort into healing myself. The funny thing is they never stopped for two seconds to even ask what's going on. They dont know that I have RA on top of fibromyalgia. Which makes all of this that much more annoying. To me, sometimes it feels like the emotional part of having a chronic illness is worse than the pain itself. I have no one to talk to it about.
Does anyone have a similar experience or have any advice on how to deal with this emotionally? I would greatly appreciate anything anyone has to offer.
Hey Srl1, I'm new to the forum as well but very well acquainted with Rheumatoid Arthritis. I've heard the same things you have bean dealing with. The whole, all you need is exercise or just take so and so vitamins is unfortunately something that most people will say without really thinking. My guess is since Rheumatoid Arthritis, the name, doesn't really convey that it's not just Arthritis and that it is an autoimmune disease that has no cure so they don't really understand. You'll get used to that and learn to politely say thanks for the advice. The people close to you will also learn to understand what it really means to live with RA and how to help. Stay positive. A lot of people just can't understand until they themselves go through the same thing. By the way, I've had Juvenile Rheumatoid Arthritis since I was 8, my RA flared up again when I was 21 and again 2 years ago. I'm now 32 and trying to get through a 2 year flare that so far hasn't responded. There will be tough days and easier days but no matter what you have to get through them. Good luck and take care.
Hi srl1. So sorry to hear that you are not getting the support you need. It is absolutely true that sometimes with conditions like RA the emotional toll takes a back seat to the physical, but it is extremely real and important. This article from our editorial team looks at managing these issues: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.
You also mention struggling with what to even tell others about your health and conditions. You absolutely are not alone with this issue. Thought you might be interested in this article form one of our contributors, who has extremely visible RA, on the fact that she still struggles with what to say: https://rheumatoidarthritis.net/living/what-tell/.
Finally, please know that you are always welcome here for support and information. Thanks for being part of the community and please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)
Oh, dear. I had a BOSS like that. Evidently you can cure RA by having a 'positive mental attitude'. Some one alert the FDA.
