The Isolation of RA Pain: Short Poem Video
Most people with RA talk about how difficult it is to explain RA pain to others. It’s frustrating to be repeatedly told that it isn’t or shouldn’t be so bad. Just today, a woman I met couldn’t wait to tell me about her friend with RA who’s able to do so much more than I can because she relies on Chinese massage instead of medicine.
Soon after I was diagnosed, I stopped talking about RA very often to avoid these experiences. Even though I write this public blog, I have the same issues as people who write to me. Many don’t get it and trying to explain it sometimes brings more anguish than it’s worth. Consequently, RA pain can be very isolating.
Those feelings are captured in today’s video which I created from a poem by Kat Dugger, one of our readers. I knew I would have precious few minutes to write up a blog while I’m here in Jacksonville for the Mayo Clinic Social Media Summit for three days… but I prepared this special video for you ahead of time!
Maybe the video will open up a conversation with someone. Or maybe you will just connect with Kat like I do. Please visit her blog, too.
Note: Tomorrow (Wednesday) night, I’ll be traveling home from Mayo & I’ll tell you about it soon!
Recommended reading
- Rheumatoid Arthritis Disease May Be the Scarlet RA
- What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure
- How Rheumatoid Arthritis Pain Affects Women’s Lives
I agree, it’s really difficult to explain the pain, how you feel it, how much. Why some days are good and others bad etc…
The worse for me is the fact it’s persistent. Even if it’s not much, it’s ALWAYS there.
But I have a good exemple now. Some months ago, I did a tatoo on my shoulder, a “medium” one. It took more than 3 hours. This day I did not took a single painkiller. The pain of the tattoo was bearable.
So when I said that my joint are painfull, and I take my four pills allowed by days against pain, believe me, I’m in pain !
Sums it all up in one minute seventeen seconds!
yes, I think she did, Deb.
20+ yrs ago Rheumatoid Arthritis was so uncertain with diagnosis, treatments and medications. I didn’t even know what my prognosis was going to be with only NSAIDS as the drug of choice. As my wrist bones fused solid and ankle bone started to fuse, I was told I’d probably be wheelchair bound in 10 yrs, unless somehow they stopped the progression. I always suffered in silence not knowing how to explain this horrible disease you sometimes cannot see, not even to my children or closest friends. It was hard not to complain and tell the truth to them while my own body waged war against itself. I never wanted anyone to worry or especially feel sympathy for me. Why I looked so healthy & good on the outside to everyone made it more of a silent struggle! Today I take each day as it comes, some good-some bad, I do what I can. I live with this motto-“When I let go of what I am, I become what I might be”. This poem video does sum up my life with RA-Thank you Kat Dugger!
OMG – you made me cry. I am SO humbled.
My God…this poem is my life. Again I am thankful God led me to this community of wonderful brave souls.
I come here because there really isn’t anyone who I can talk to who understands. I don’t want to sound like I’m whining – oh wait – maybe I am whining…
I think we have kind of a motto about that: “No, it doesn’t sound like whining to me. Since I know how it feels…”
Wow! Thanks for writing this poem. Simply… a reflection of our condition. It cannot get more realistic. I love your site. Thanks again.
Sincerely,
RA Warrior from PA
Thank you for posting this poem. It made me cry to know others feel exactly like I do. I needed that!
Thank you Kat and Kelly
I just loved the poem! It’s something maybe I can share with others especially my family. They say I talk to much about RAD. Who can you talk to then? Here with al you and Kelly. I’m so glad your back Kelly even tho I confess I’ve been gone too. From here that is. I’ve come back to the soft place to fall where y’all don’t mind listening to me. I love listening to all of you! If it was for this blog and Kelly starting it I don’t know where I’d be right now! Thank you all and Happy Thanksgiving! P.s. My daughter is cooking this year! Yay! ? Pss I have a new grandson Danny. The light of my life! ???
That must be so wonderful Judi! Enjoy him!