The uncertainty of scleroderma leaves me frustrated

Overwhelmed Columnist Amy Gietzen  struggles with a slew of mysterious symptoms

A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly.

When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold waves of water, leaving me numb and frozen with shock. I felt like I’d never be able to cope.

​For years I put on a brave face. I put my head down and did the work, always trying to be proactive and positive in the face of scleroderma. But I still felt like I was moving further and further away from my goal of stabilizing my symptoms. When would all of my hard work, dedication, and treatment compliance pay off?

I’m tired
A common mentality in our society is to “sleep when you’re dead,” but I’d be so grateful if my body afforded me a break.

Lately, I’ve been tired of my life, consumed with the overbearing weight of 21 years of bad days and pain-filled nights. The numbness I felt early on in my journey has thawed and left me with an all-encompassing pain that’s never quelled.

This past year has been a whirlwind of raw emotions. I’ve been dealing with an assortment of symptoms, including lightheadedness, blurred vision, heart palpitations, and severe dizziness. My days have gone from productive to having to brush my teeth lying down due to dizziness and breathlessness.
When will my body finally be able to rest? Will scleroderma ever set me free?

Still no answers
As my dad drove us back home to New York after yet another slew of appointments in Pittsburgh, I looked out the window, focusing on the landscape whizzing by. I began taking in the severity of my medical situation. What will I do if doctors can’t figure out what’s wrong with me?

I endured two full days of pleading my case with my rheumatologist and cardiologist, crossing my fingers that they’d recognize what was wrong with me. I’ve been to Pittsburgh six times so far in 2023, each time leaving with a new treatment plan to try. Unfortunately, I’ve struck out with each one. Nothing seems to alleviate my symptoms.

Now, if you know me, you’ll know that I am not one to complain. Despite pain and discomfort, I usually try to grin and bear it. After all, I’ve been living with scleroderma for 90% of my adult life. I know how this game is played. Symptoms come and go, and some last longer than others.

Usually my medical team and I can find the right combination of medication, therapy, and dietary changes that allows my symptoms to slowly dissipate. But this time, nothing seems to be working. I feel more and more defeated after every trip to Pittsburgh. Will I ever get my life back?

Practicing self-compassion
Living with scleroderma can make me feel like the weight of the world is on my shoulders. The amount of uncertainty and life-altering changes could make even the strongest people want to give up. I think many of us with chronic illness eventually reach a breaking point, but I also believe that it’s perfectly reasonable for us to feel uncertain, scared, frustrated, helpless, and angry at times.

I know that I’m a fighter. Even though my doctors are still trying to figure out what exactly is causing all of my peculiar symptoms, I am confident I’ll beat this funk I’m in eventually.
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There’s no right way to deal with illness. There isn’t an appropriate way to represent pain. The only thing I know for certain is that today I feel OK, and even if it’s temporary, I find comfort in that feeling.

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.