Have you heard the saying, “You never know what others are going through, so be kind?” That’s true of anyone with a chronic, rare condition, including people with complex regional pain syndrome (CRPS). According to the McGill Pain Index, CRPS has been identified as one of the most painful conditions known. The pain includes burning and “needles and pins” sensations, as well as changes to to skin appearance and swelling of the affected area.
We asked people with CRPS in our Mighty chronic illness and chronic pain communities “what’s something you do to hide your pain that others may not realize is because of CRPS?” Their answers are a reminder to show kindness as much as possible, since we don’t often see the pain others are facing on a daily basis.
Here’s what our CRPS community had to say:
- “If anything, I constantly shift my weight from one side of my body to the other. I’ll stop while I’m walking for a moment to try to lessen pain, and lean my head as far back as it can go at any chance I get to try to get the joints to pop back into place and/or alleviate some of the pain. I also despise ever showing my bare feet because of how red and purple and swollen they get, so socks are a constant for me.” – Lauren M.
- “After a flare-up that scares me, or if it appears to be a new kind of flare-up, I’ll laugh it off by saying, ‘Well, that was fun and new.’ If I let myself panic, it would only trigger more pain and make things worse. Plus, it helps me continue to normalize the pain.” – Sally F.
- “I dress like a tourist, wear sunglasses, carry a small shopping bag and try to look around a lot — that way no one cares that I’m walking very slowly.” – Lyeka B.
- “I avoid people and public places as much as possible. I tend to do all of my shopping online, sometimes even grocery shopping. And I actually enjoy grocery shopping, so this is kind of a bummer for me.” – Susan N.
- “I just respond with ‘I’m fine.’ That’s all I have come up with so that my pain doesn’t affect others.” – Breezy N.
- “I put my right arm (the affected limb) in nooks and crannies at work so people can’t bump me or pat that shoulder. I stay away from things that vibrate and change up repetitive motions to keep from causing a flare.” – Marie C.
- “I keep to myself a lot. It’s very isolating. It’s hard to get out to socialize when you hurt so badly you can barely stand it. And forget explaining it to people. They don’t understand and some are very judgmental.” – Laurie B.
- “I won’t hug you or shake your hand in fear of it causing a flare. I’ll typically just say ‘I’m a germaphobe’ or just completely ignore any advances.” – Rebecca R.
- “I wear closed shoes all the time so people can’t see the color difference in my feet. When a stranger asks if I’m limping, I’ll pretend I’ve just rolled my ankle so I don’t have to explain CRPS to them.” – Alana S.
- “I joke that I just don’t want to obey my doctors when I’m wearing flips flops instead of supportive shoes. The truth is, shoes hurt me a lot. I wear the flip flops to try and have less pain. My joke is my way of hiding the pain shoes cause me.” – Rachel H.
- “I just started a new job and I have to hide everything. I have a tough time walking, but I don’t let it show. It’s not easy to do, but I do it. I don’t want them to know. I have been open about it at other jobs, and it wasn’t good… so now I am hiding it all.” – Daniela H.
- “I sit a lot or stand against a wall and take pressure off my leg. I also wear leggings to get past the hypersensitivity that increases my pain levels. Unfortunately, I just don’t go out much.” – Sabrina H.
- “I smile. I tell them I’m just feeling tired, and I always cover my face when it pulsates to stop people seeing the faces I make when I’m in pain.” – Abi S.
- “I zone out of conversations, of life in that moment. I forget what I’m saying mid-sentence. It’s embarrassing, but I try and make a joke of it and move on.” – Kacie C.
- “I use the computer to communicate, so people won’t hear the tone of my voice change when a pain wave hits. I wear very soft clothes with long sleeves and long legs, so that I will not cry from the act of just getting dressed.” – Krista B.
- “I never show the world that I am pain. I keep smiling and going along the best I can without showing it on my face.” – Cassidy S.
- “Most days, shoes are too much for me to handle. During summer, I’m always in flip flops so I don’t have to wear socks and shoes, especially when my sensitivity is high and I’m swelling. During colder days, I wear the most comfortable slippers I can find. I’ll even wear them to the store or church, despite how it may look, just because it’s the only way I can tolerate footwear. All this, and I try to mask the pain with a smile. If I walked around showing how I truly felt inside, people would be truly concerned. The pain is unbearable most days, but CRPS warriors do the best we can to fight for any sense of normalcy.” – Marissa R.