As a Person Living With Scleroderma, Is It Healthy to Ponder the ‘What Ifs’?

Finding your footing is tricky after a chronic illness diagnosis

Amy Gietzen avatar

by Amy Gietzen |

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I sometimes find myself envious of other people. I’ll look at a person walking down the street and think, “What if my life path was different?”

It’s not uncommon for a person with scleroderma to try to rationalize why their life is the way it is, and why their journey isn’t as straightforward as someone who is healthy.

The number one question I consistently ask myself is — and always will be — “Why me?!” It’s human nature to question all of the unpleasant things that happen in our lives, especially ones we have no control over.

Don’t get me wrong — I am very happy with my life. I am so grateful for all of the amazing people I have come to know and love, and for every day that I am still here to enjoy life’s blessings. But sometimes, on those rare occasions, I’ll catch myself wondering how my life would be if things were different.

So my question to readers is this: Is it healthy to think about the “what ifs” and the “could have beens”?

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Change is a struggle

I was diagnosed with scleroderma in 2001. It caught me completely off guard, and to make matters worse, I couldn’t find more than a sentence or two anywhere I looked explaining what scleroderma is.

When I tried to do some medical research, I kept shooting blanks. Trying to look for a specialist to treat me locally was laughable. No one seemed to know what scleroderma is or how to treat it. I felt like I was living in an episode of “The Twilight Zone.” It took several years and a lot of work on my part to get a great team of doctors in place to treat me.

I did my due diligence by researching any doctor I could find in a Google search of scleroderma. I also used local schools and hospitals as a stepping stone to gather information. Eventually, I found a scleroderma treatment center four hours from my home, which I’m proud of because I did it all on my own.

After my diagnosis, scleroderma sometimes seemed to take over my life. I couldn’t physically do most of the things I used to do, things I had loved to do, such as swimming, dancing, and enjoying amusement park rides. Being unable to do these things began to affect my mental health.

Reinventing yourself with scleroderma

Having to completely redesign your entire life to suit an illness is difficult and frustrating. That is where the envy of others comes in. For me, it’s not about their money or material things; I envy their carefree attitude and the mindset that there is an abundance of time to do whatever they choose. Sadly, I do not have that luxury. Time seems to be the one thing I can’t get enough of.

With scleroderma, looking back on my life is something I try to avoid. It hurts my heart deeply to be reminded of what once was and can never be again.

Many people don’t understand what it is like to have your entire life change in the blink of an eye; to be told you have an incurable disease. The weight of those emotions can feel like drowning from the inside out.

Is it healthy to think about the “what ifs”? I believe it is — to a point. You can’t change what fate has put in your path. Everyone is allowed to feel exactly how they need to, judgment-free.

Finding my footing

What you can do is restructure your life in a way that makes the most sense to you. You can find joy in the little things, such as family and friendships. You can also learn to embrace your illness and give back to the disease community, like I do. I try to be present in every breathing moment I have on earth. I try not to take things for granted, and I have learned to find beauty in every situation.

After experiencing moments of sadness or anger, I try to make a conscientious effort to plug back into life and cherish how amazing and unique this world is.

Everyone falls down at some point, right? I’m more concerned with what I will do when I get back up!


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.

Comments

Joel Cortez avatar

Joel Cortez

I totally enjoy reading your articles, and we as readers -well, I can't speak for everyone else, but I can feel the emotions behind your words - sadness, anger, hope and then the calmness. Looking back on your challenges at such a young age with very little literature and the internet in its infancy, the up-hill road must have been like climbing Mt. Everest with no guide. When I talk to someone with no knowledge of my disease, I'll enlighten them with smile and a positive outlook that I will live my life to the fullest with my family and dearest friends. Keep your chin up Amy!!!..and may you also live your life to the fullest!! You are giving hope to all of us...

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Amy Gietzen avatar

Amy Gietzen

Joel, Thank you for your kind words. It brings me such joy to be able to help other people like myself living with this disease. I know how hard it can be and honestly writing is my way of coping and sorting through my emotions.

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Jan Ames avatar

Jan Ames

I too have systemic scleroderma and it is very depressing . I have feeding tubes for mainly my problems are with esophagus and stomach. I now have heart involvement too and some lung. In Feb I had a endo carcinoma temoved from end of small intestine so that caused diarrhea ( carcinoid) so along with scleroderma it’s more depressing

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Amy Gietzen avatar

Amy Gietzen

Very sorry to hear of your difficulties, I try to take one day at a time and not focus on the overwhelming parts all at once. -A

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Rosario Aiuto avatar

Rosario Aiuto

Thank you for your insight toliving with scleroderma. My daughter has defussed and it has been hard on the hole family ,she has had id for 9 years she is 27 now. She is getting married in a month and living her life to the fullest...as a father i have never been able to answer her question to why?? I have to say a speach for her wedding and i am lost for words do you have any ideas for me to ay to her ?? Ross Aiuto thank you again for helping me throw your news letter it really helps me get by!!

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Amy Gietzen avatar

Amy Gietzen

Congrats on your daughter and her marriage what a blessing! I think you will know exactly what to say to her because from your words here you love her very much! Speak from your heart and nothing you say will be wrong. As to the question of why it is one many of us ask ourselves and others. It is a question that unfortunately there isn't an answer to, but you can answer a question of how - how far she has come, how wonderful she is, how inspiring her story is to you and others-

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Kate Menken-Handford avatar

Kate Menken-Handford

Thank you for all of your comments. I am always looking for a way to vent, sadness, anger even happiness to just sit and have a good cry. I cannot cry and do not know why so I am searching for another way. My orders daughter has breast cancer and Cher first chemo is next. And I cannot cry………Fiber

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