10 Things You Should Know About My Scleroderma Diagnosis
I have scleroderma. For the most part, I am pretty private about my scleroderma diagnosis — except for the fact that I write a column. Go figure.
However, the thought of discussing my diagnosis face to face with others causes me anxiety. I know it sounds strange, but I can sense impending issues that surely will follow.
Trying to explain my illness with a brief introduction can be daunting for the person I’m speaking with and for me. I’ll notice a certain look wash over their face and know they don’t know what to say. It’s OK, I didn’t either.
Instead, I’ll do what I do best: I’ll write it out for both of us, which I’ve done in the following. Please remember that everyone has a different journey, and this is only mine.
I have a full-time job being a chronic illness patient.
A scleroderma patient spends an ample amount of time sitting in a doctor’s office. As a result, we have learned to come prepared for a lengthy wait.
Cellphone, charger, snacks, reading material — check.
Scleroderma has afforded me a laundry list of practitioners. Because it is systemic, multiple systems in our bodies are affected. Our bodies are tired and worn out. It is exhausting to have blood draws, X-rays, skin biopsies, and a slew of other fun things done to our bodies in the name of science. It’s like a merry-go-round. But we come prepared!
I grieve the old me.
When I say I miss me, I do. The old me was before my body started to betray me.
I liken my grieving process to the five stages of grief:
- I wanted to deny my scleroderma diagnosis.
- To say I was angry was an understatement. Actually, I’m still angry.
- I bargained with God: “I will eat better and exercise more. Would you please let this diagnosis be wrong?”
- I became highly depressed. I still battle depression and anxiety. The depression stage is the most challenging for me to get out of, but the process is fluid. Moving through these stages — not necessarily in order — is expected.
- I have yet to pass through the final step, acceptance. I’ll occasionally visit this stage but haven’t quite mastered it.
I am happy for you, but I am also slightly jealous of you.
Please know that I want you to live your best life. Seeing you succeed and be happy makes me over the moon with happiness for you. But sometimes, even when I try to hide it, I feel jealous. I want to keep living my old best life. Trying to adjust to this new life is complicated and messy.
If you take the time to learn about my scleroderma diagnosis, you genuinely care about what I am experiencing.
When people in my life tell me they have researched my disease, it makes me feel like they are trying to understand. Receiving a rare autoimmune diagnosis is tough to take. The weight of the diagnosis can be overwhelming. Thank you for taking the time to understand me.
My emotions are like a roller coaster.
One minute I might be feeling fine and on top of the world, while the next, a crushing wave of fatigue will hit me and swiftly pull me under. This moment will remind me of my scleroderma diagnosis. The disease is never far from my mind, and neither are the emotions I experience when dealing with it. Please be patient with me. I want to be happy and feel better.
I’ve become an internet physician. I can Google symptoms and diagnose myself with the best of them!
I am slightly obsessed with Google. My intimate relationship with the search engine giant started when I began having symptoms.
That reminds me, quick tip: Take photos of changes you see on your skin, such as rashes, hives, tiny red dots, and other things that like to pop up. You and your physician will thank me.
My body is much like a car. When a car acts up, we call the mechanic and take it in. Therefore, I document everything.
I’ll tell you I’m fine, even when I’m not.
Most of the time, I won’t fess up to being unwell. Watch for my cues, such as the way I move when I’m hurting and my lack of appetite when I’m exhausted and in pain.
I will be scared.
People will tell me to be positive. They’ll say to me, “At least it’s not cancer.” And they’re correct. Yet I remain scared and uncertain about how my life will change. Each new diagnosis prompts another Google search. I constantly worry about becoming incapacitated and wonder what will happen to my family. My life is irrevocably changed, and it scares me.
I live in near constant pain.
Initially, I probably will complain a lot. Bear with me. My body is trying to adjust to living in constant pain. The initial process was a difficult and draining time in my life. However, anyone living with this disease and other chronic illnesses will understand. Our bodies tend to become accustomed to extremely high levels of pain.
Let me be pointedly clear: The pain is still there. Because of this, the standard pain scale doesn’t always accurately reflect our pain level. When we say we hurt, we do.
I will feel like a burden.
More than anything, I do not wish to be a burden to anyone who loves me and cares for me. This feeling is probably the hardest one I face. Those who are diagnosed never imagined a life with an autoimmune disease.
Losing our ability to do the big and small tasks in life is heartbreaking. We get mad at our bodies for failing us. We don’t understand why one day we are golden and the next we are struggling to get out of bed and start our day.
What are some things you would like others to know if you’ve been diagnosed with scleroderma? Please share in the comments below.
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.