Do I want to be called a scleroderma ‘warrior’ or a scleroderma ‘fighter?’

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.

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The Autoimmune Slayer’s journey since her scleroderma diagnosis

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.