How Fighting Scleroderma Is Like Waging War — and Isn’t

Analyzing the 'disease as a battle' metaphor for all the things it says

Amy Gietzen avatar

by Amy Gietzen |

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Humans have known war almost since humans existed. Thousands of civilizations and religious evangelists have started wars to conquer their opponents and live to tell the tales.

The difficult journey of living with scleroderma resembles preparing for and engaging in war. We build our bodies and minds to face the ultimate battle to survive, as scleroderma wreaks havoc on our physical beings. The visceral idea that those of us chosen will suit up and fall out to the front lines to defend ourselves, mind, body, and spirit, is akin to military soldiers trekking through terrain to gain control of enemy lines.

I still subscribe to that notion of scleroderma invading my body. For the longest time, I’ve related my journey to a battle. We’re creatures accustomed to savagery. When disease strikes, we gear up, quite often destroying everything in the process, even the healthy parts of our biological makeup.

The battle lines were drawn from the moment I was diagnosed with scleroderma. My disease seemed prepared to fight for the long haul, and I was trying to figure out how to defend myself.

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I learned pretty quickly that I was outgunned. I had no intel on why or how I came to be diagnosed with scleroderma, and I had no inkling of the proper defense against it. It seemed clear that scleroderma had no intentions of fighting fair. For the better part of two decades, I’ve lived in the shadows, fending off attack after attack with no truce in sight.

A war definitely began in 2001, when I was diagnosed.

The flip side of the ‘war’ metaphor

Though I find the metaphor of war useful in my own story, others have shown me that the language of “fighting” a disease or “losing a battle” is a toxic binary. It divides the sick into winners and losers — those who beat their symptoms and those who lose the fight. This militaristic comparison to sickness is perhaps rooted in the notion that our personal experiences and disease outlook can change our biological outcomes.

We then seem to find ourselves with the perverse idea that poor health or disease is a battle we must win. We hear stories daily about famous athletes diagnosed with a terminal disease who are described as “fighting with all they have” to “win the battle” for their health.

Doesn’t this set up a false narrative that the people who fight the hardest will win the war, and the losers — well, they’ll die? Is that the analogy?

However, it’s not the person who fights the hardest and longest who wins the war. To me, that concept is offensive to so many who pass away after being sick with terminal illnesses.

Did they not try hard enough to live? Doesn’t that imply that they didn’t fight hard enough?

What a disempowering belief system to hold.

The road to a resolution

A more powerful belief is one that we hold inside of ourselves. The human body is a vast, intricate specimen. Yes, it can contract a disease and even die. But the body also gives us the ability to heal our hearts emotionally, love with our souls, laugh until our bellies hurt, and so many more impressive, beautiful qualities.

Living with an illness that may be the cause of our demise is often a morbid cautionary tale. However, I look at my life over decades of “fighting” and watching my body grow weaker and weaker — and I still believe that peace will ultimately win over war.

My belief is that life should be cherished for the simple things: walking with a great friend, spending a late night laughing with siblings, or watching the birth of a grandchild. All of these glorious moments are the flip side of the decimation that scleroderma is causing in my physical body.

I tend to compare it to the age-old saying, “Make love, not war.” I more often than not instill that mantra in my life, because the other side of that proverbial coin at times seems too much to bear.

Forever, most certainly, isn’t promised. Whether you choose to frame your health issues using winning or losing analogues, you should use language that describes your own experiences. There is no right or wrong way to deal with illness.

Either form of thinking comes to the conclusion that we’re all on this planet just trying to survive.

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.


Cindy Kanis avatar

Cindy Kanis

Thank you Amy for sharing. Always can take something away to think about and often be encouraged.

Mike Leighlitner avatar

Mike Leighlitner

Amy, thank you for sharing your thoughts, wisdom, and personal experience with Systemic Schleroderma. I was recently diagnosed with it and have only been thinking fight, fight, fight. Your article "How Fighting Scleroderma Is Like Waging War — and Isn’t". really made me think about things more openly. You have given me a more peaceful yet determined way to think about my personal path.
With Respect

Amy Gietzen avatar

Amy Gietzen

I am sorry to hear you were recently diagnosed. I know firsthand how emotional can be all over the place when having to come to terms with your diagnosis. My advice to you would be to try to be positive and surround yourself with people who love you and will support you. It is also a good idea to find a specialist that you click with. Take care and remember you are not alone and there are people all over the world to connect with.

Tina Holmes avatar

Tina Holmes

Amy, I wanted to write you a quick note to say how enjoyable your article was to read. You must have a very creative mind to write so beautifully. I too have this disease and I am in the early stages. It is good to know there is someone close by in NY to connect with. I live in Rochester! Go Bills! Praying for Damar.
Take care,
Tina Holmes

Amy Gietzen avatar

Amy Gietzen

So very sorry to bear your early-stage diagnosis. I am like you said not too far away so stay strong and remember you are not alone!

Meggie avatar


I’ve been reading your articles for many years. Your writing has always touched some part of me. I look up to you on your ability to get through the tough times. I too have systemic scleroderma. I’m in my 60s and was diagnosed 30 years ago. Everyday I wake up to a new situation. It has been an unbelievable roller coaster ride. Thankfully my husband has remained by my side, a couple of friends and just a couple of family members. Laughing, joking around and mild misbehaving has worked positive wonders. Although anxiety will never leave my side. We are still very strong and we must carry on! xo

Amy Gietzen avatar

Amy Gietzen

Thank you so much for your kind words. I am so glad to hear your husband and family are by your side making life more enjoyable!

Ivette Gimenez avatar

Ivette Gimenez

My daughter Terry was diagnosed with Scleroderma in March of 2022, after a fall that affected her brain... she has been at death's door 3 times but with God's Grace keeps surviving... On January 6, 2023 she turned 59 years old... Some days she progresses & some goes back... she is taking dialysis 3 times a week, her itch is constant - non-stop all over her body & now she is developing cut parts of her body & we don't know why - very painful... she has lost all her hair, her face, especially her eyes, get red & swollen... she is my precious child & I pray constantly for her health & life... Oh! She also had a Peg inserted in her stomach & when they check her blood the arteries lead to her veins which are so fragile sometimes break... it's a miracle she lives day by day, withstanding all pain & trusting God...
I feel very moved by your case, starting at such early age & have placed you in my prayers now also - it's a terrible illness & no matter how hard you'd try or want to help, you can't - seeing my daughter in so much pain breaks my heart ... thank you for reading my comment & May God bless you... Mrs. Gimenez


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