Do I want to be called a scleroderma ‘warrior’ or a scleroderma ‘fighter?’
Living with a chronic illness is like fighting a war
When I was diagnosed with scleroderma, I cried. I wondered, “What is going to become of me?” I didn’t feel brave. I felt helpless and afraid.
My scleroderma symptoms didn’t come all at once. Shortness of breath and fatigue — symptoms of interstitial lung disease (ILD) — came on slowly. These can delay an ILD diagnosis because they are vague and can have many causes. For example, I have pulmonary arterial hypertension as well as scleroderma, and difficulty breathing and fatigue can also be caused by a scleroderma renal crisis. In my case, however, the symptoms are caused by scleroderma’s direct effect on my lungs.
I also have gastrointestinal symptoms, such as heartburn and bloating, that are very bad and my reflux is unbelievably painful. Whenever I have reflux, my throat hurts so badly that it feels like I’ve been scalded. Drinking water helps thin out the mucus and acid, but it still hurts. I take medications to control my stomach acid.
Fighting the immune response
My immune system is trying to kill me and I have to fight it. Scleroderma causes scarring and inflammation, so I take immunosuppressants such as mycophenelate mofetil (Cellcept) to fight these effects. These medications are my weapons.
Immune suppressants also work to keep my disease under control the disease. To me, having scleroderma that is not well controlled is just as bad, if not worse, than the side effects of medication.
Living with a chronic illness is like being in a war; I feel like I am constantly under attack. A person living with chronic illness is often referred to as a warrior.
When I think of a warrior, though, I think of someone who is a trained soldier, one who is enlisted or drafted. But I’m not either of those things. Scleroderma just happened to me. I don’t feel like a warrior. I’m not distinguished in combat and I don’t have medals or campaign ribbons.
I may not feel like a warrior, but I accept that a lot of people with chronic illnesses do.
I do struggle and I fight, however. I feel like a fighter against an opponent that doesn’t fight fair. I sleep; scleroderma doesn’t. While I need to rest, scleroderma is relentless.
A scene in the movie “Apocalypse Now” shows a young soldier on his first combat mission refusing to get off the helicopter to join the raging battle. He yells, “I’m not going! I’m not going! I’m not going!” He’s terrified. I feel like that kid sometimes. I don’t want to go to war. I don’t want to fight something I can’t see. But I have no choice.
When I was diagnosed with scleroderma, I wasn’t brave. I didn’t feel brave, anyway. I was scared. I’m still scared — even after all these years. But I try not to let fear keep me from making good decisions. Like the combat mission for that young soldier, scleroderma doesn’t give me a choice. It doesn’t care what I want. I’m in the battle and I have to fight. I do what I have to do to live. I continue placing one foot in front of the other, to keep living and survive, and I don’t think about things like odds. I am a fighter.
I am a survivor, too. For now, I’m OK with being those things.
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, and are intended to spark discussion about issues pertaining to scleroderma.
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Meggie
Yes me too! I am constantly fighting and always full of anxiety. Your article is exactly what many sclero girls/guys are going through everyday. Yes it is terrifying but we must take our drugs and keep on fighting.
Donna Ballard
Enjoyed your article!
Joseph
This was a very powerful illustration of the importance of how we describe ourselves. Thank you for sharing brief anecdote of your experience with scleroderma Tomisa.
(Joseph dx 2019)
Joanne Griffin
I got tears in my eyes when I read your column. That is exactly how I feel. I was not diagnosed with scleroderma until I was 68 years old. It took that long for a clinician to put it all together when I showed up with the weird diagnosis of osteoporosis in my LONG bones (femurs/humerus) and not my spine. All the years with dry mouth/eyes/lady parts, reynaud's, acid reflux, IBS, trigger fingers, carpal tunnel syndrome, plantar fasciitis, and fatigue. I also apparently had psoriasis on my knees, elbows, fingers and scalp that was never diagnosed - and have now turned into severe arthropathy even though the psoriais has been gone for over 20 years. I had tendon repair surgery on my left shoulder and the surgeon could barely find enough solid bone in my humerus to anchor the tendons and even he didn't tell me it was from osteoporosis. I cannot have knee replacement done because I don't have enough bone in my femurs to anchor anything. I am one fall away from fracture. I am in pain 24/7 - the degree only differs. If I overdo - I can barely walk the next day. But my family doesn't take any of this seriously because I am not in the hospital, not on oxygen, not on chemo (although I am on drugs for the scleroderma). They find my diet childish (food triggers are a problem for me for alot of inflammation) and get upset when I have to cancel plans because I am having a bad day. As of yet - it has not involved my lungs or kidneys - but I worry that it will happen. Thank you for sharing your struggles.
Douglas Garcia
It’s messages like these that help me deal with this awful disease. Diagnosed in 2019 after a physical I’ve gone from Raynaud’s to having to finally apply for disability giving up a career I’d spent years developing. The symptoms I’ve experienced including ILD, severe vascular issues eventually resulting in a double bypass have been emotionally draining. I’ve had to develop a way to maintain a pill schedule I never thought would be necessary. I’ve suffered through a digital amputation. Meanwhile my fingers are so numb that I must use Microsoft Word to put together thoughts to post anywhere. I was widowed after 37 years, not too long after being diagnosed, finding myself mostly alone. But I still fight on learning everything I can about scleroderma. Just like that young soldier in “Apocalypse Now” I’m terrified but know there’s no choice but to fight on. I know I’m not alone.
RHONDA R GLAUDE
Oooweeee! All true
Sylvia Cayouette
I also have scleroderma with other issues. I have to keep a positive attitude or I can get real depressed. I pray your scleroderma will go into remission and give you some relief. I know it’s no fun. 🙏🏻
Basheera CK
I am also suffering from generalised morphia itching is main problem using levoset tab any other medicine found
Jane Androulakis
Hello from Australia. I agree with everything the author has so clearly expressed.