Many people tell me they worry about how much pain I endure and wonder if having scleroderma hurts. I rarely address this because I don’t want others to worry about me. I also don’t want to bore anyone with a lengthy description of all my ailments.
Have you ever innocently asked someone how they’re doing and wound up listening to a rambling session on their assorted health issues? It’s hard to fake interest in someone’s infected toenail or abundant ear wax drama for more than a minute or so. I never want to be one of those people who go on and on about my pain until you’d sell your soul to the devil just to get me to shut-up.
Typically, when asked how I am feeling, my knee-jerk reaction is to respond with a smile and say, “I’m doing great!” If I tell the truth, my response may be a bit different.
“How much time do you have? Let’s start with my feet. When I was in the hospital for 218 days, my feet hung like weeping willows, causing doctors to question if I would ever walk again. I developed a wicked case of neuropathy, which resulted in the sensation of being relentlessly pricked with a thousand thorns on the soles of my feet and ankles. After physical rehabilitation, I learned to walk again but the pain in my feet persists. Although the neuropathy has improved tremendously, my toes remain curled and I visit the podiatrist every three weeks to have calcification deposits scraped off my feet.”
I don’t know about you, but I’m bored already, and I only covered my feet! If I went through the rest of my limbs and described the discomfort that accompanies scleroderma, this could turn into a dissertation.
Does anyone truly want to hear about the throbbing pain I sometimes experience when the calcification deposits on my fingers and joints flare up? Who honestly wants to learn about the itchy infections that occasionally develop around the site of my stoma (I had an emergency colectomy and have a permanent ostomy bag) causing insatiable burning? Is anyone out there sincerely interested in exploring the riveting world of Raynaud’s syndrome? Unless you’re my doctor, this sounds like a snooze-fest to me.
In no way do I want to undermine the legitimacy of pain and how it influences our lives. My pain from scleroderma is real, but talking about it all the time is not going to make it go away. I see my doctors regularly, do what I can to explore new options, attend scleroderma support group meetings, and try not to do stupid things that will intensify the pain. Constantly discussing my health battles will not result in the pain disappearing.
Some of you fellow chronic pain sufferers probably are thinking my pain must not be so bad, if I take such a flippant attitude about it. Trust me, I’ve experienced severe physical pain in my life. Like, oh, I don’t know, the time I became delirious as my colon died inside my postpartum belly. Or that time doctors performed an emergency tracheotomy on me while I remained conscious with no anesthetic. I’m not saying we should mask our pain and slap on a smile when doctors drill a hole in our tail bone and insert a tube to drain out a massive infection (yep, true story).
I know the above paragraph may suggest otherwise, but I generally don’t see the point in trying to convince people of how much pain I’ve endured. And I do not want to compete with others for first prize in a pain-tolerance contest.
Are there days when I just want to wallow in my pain and throw myself a pity party? Of course! But I try to throw these parties rarely so that I can throw myself into living my life instead.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.