5 Things Not to Say to Someone Living With RA
I’ve spent my whole life with joint pain, swelling, and stiffness. In my younger years, it was chalked up to growing pains or injuries from being athletic. It wasn’t until I was 30 years old and officially diagnosed with another autoimmune disease (Crohn’s disease) that I was correctly diagnosed with rheumatoid arthritis (RA).
This was a turning point for me in a) having someone recognize that what I was struggling with what was more than "average" pain, and b) in being able to treat my symptoms appropriately and more effectively.
Dealing with hurtful comments about RA
It’s been nearly 8 years since I received my official diagnosis, and although it’s sometimes just a term in the middle of a list I read off cavalierly when describing my often poor health status, it truly has impacted my life in several ways.
One of the most frustrating things for me has been when anyone — people I know who are close to me, or even strangers that I’ve never met before — makes an offhand comment about living with RA. I know, deep down, that these comments are usually because they are naive, and sometimes they even mean well in what they’re trying to communicate, but they usually don’t think twice about how something they say can affect me and any relationship we’ve formed.
My top 5 'things not to say'
Here are the top 5 things that I HATE hearing from people when I mention RA, and how I usually respond to them:
1. "You’re too young to have rheumatoid arthritis."
I appreciate that you think this disease only affects the elderly, but it actually affects people of all ages. There are children, teenagers, and young adults suffering with this autoimmune disease every day.
2. "I know you said you have arthritis, but you don’t look sick to me."
Thank you, I appreciate knowing that I am usually able to hide my symptoms. I try to keep it this way, because I don’t always share with people that I live with RA. Also, you’re only seeing me for a short while, and periodically. During the times my disease activity flares up, I tend to be less apt to move around or even leave my house. I spend a lot of time using heating pads, doing physical therapy, and resting my joints when I have no other choice. Trust me, I wish I weren’t "sick."
3. "You’re just stressed. If you think about all the good things in your life, you’ll feel better."
I appreciate your trying to help, but unfortunately, there’s no way to think oneself out of an autoimmune disease. Rheumatoid arthritis is very serious in that my body attacks itself, causing severe joint pain, fatigue, swelling, and stiffness. I am overly grateful for the good things in my life, but they don’t change or take away the hard things like a lifetime diagnosis of an autoimmune disease.
4. "Have you tried something like yoga?"
Thank you for the suggestion. Based on the joints in my body most affected by RA, yoga is not always something I can do without pain or causing further exacerbation of a flare. When I can move my body, I try to do that in ways that I know are positive and helpful. But many times those movements cause periods of time where, afterwards, I’m stuck in bed because I pushed my body too hard. It’s a very fine line to walk between trying to reduce pain and suffering from increased pain based on movement.
And currently, the most hurtful to me...
5. "Don’t you think you’d have less joint pain if you lost weight?"
If losing weight was easy for me, I’d have done it long ago. Unfortunately, I live with additional medical conditions beyond rheumatoid arthritis, which makes losing weight extremely difficult, if not impossible. Yes, living in a plus-size body perhaps puts a little more stress on my joints, but that doesn’t equate to RA. When I was initially diagnosed, I weighed much less than I do now, and I still met all of the criteria for the autoimmune disease. Unfortunately, RA symptoms aren’t dramatically different based on one’s BMI.
How do you deal with hurtful comments about life with RA?
Have you heard any of these comments before, or other comments that have been frustrating or upsetting to hear? How do you deal with hurtful comments? Please share your support or advice for our community below.
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