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

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.