Scleroderma makes me feel like my body has betrayed me

After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong with me? My body hates me. I hate my body. What did I do to deserve this? Why can’t I just be normal again?”

While many of the feelings I experienced are hard to describe and identify, I vividly remember the feeling of betrayal coursing through my veins for months after my diagnosis.

Because scleroderma can affect people in so many different ways, and because symptoms can ebb and flow and change over time, it can be easy to think that your body is out to get you. For me, it felt like my body was betraying my trust in it.

I can’t recall a time since my diagnosis that I wasn’t in pain or, at the very least, uncomfortable with the changes I was experiencing. In my first few years with scleroderma, I felt like I had no control over what was happening to me. At any given time, my hands would cramp, my muscles would stiffen and tense, and my skin would itch so intensely that I needed to ice it with cold packs.

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Understanding why we feel betrayed

Feelings of betrayal are normal for those of us living with scleroderma. But it’s essential to deal with those thoughts and feelings so that we can move forward and find acceptance.

Figuring out what betrayal means to you can help you understand why you’re experiencing that emotion and how you can combat those negative feelings. Betrayal may stem from the following:

A loss of control

Your body may start moving or performing in unexpected ways that feel painful, frustrating, limiting, or even embarrassing.

As I sought some level of relief early in my diagnosis, I constantly felt at the mercy of medical professionals, medications, treatments, and procedures. I didn’t think I had any control over my life.

Fear

Scleroderma patients may experience different symptoms and require different treatments, but one thing is always true: The disease alters our life forever. Many of us deal with substantial fear regarding life changes we might have to make and what our quality of life might look like down the road.

Anger

Anger is often associated with betrayal because betrayal feels inherently unfair. Being upset with your body is understandable, especially when it forces you to change your life in significant ways. For instance, it can be maddening to lose some independence and be trapped in a body that doesn’t feel like your own.

Denial

You may feel confused by your body’s changes, and it can take time to accept the presence of scleroderma. Before I was able to come to terms with the disease, I needed to work through my feelings of betrayal to make room for growth.

Moving past the feelings

Venting to a friend or loved one can be cathartic. They might not be able to fix the problem, but feeling heard and loved can help us process our emotions in a safe space.

After my diagnosis, I fully leaned into my family and close friends for support, and I borrowed their strength at times when I didn’t feel mine was enough. If you’re still struggling after talking to a loved one, consider reaching out to a mental health specialist.

You could also try writing down your feelings — especially the hard ones. I started to journal the day I learned I had scleroderma. I was able to express my pain and feelings of isolation and work through my emotions page by page.

I think a considerable part of why I felt betrayed is because I saw my body as broken. Instead of trying to fix myself, though, I started treating my body with kindness. When I shifted my focus to loving and nurturing myself, the things I was doing to manage my disease felt more comforting and positive.

Scleroderma changes the trajectory of our life from the moment our doctor utters the word. But if we can give ourselves enough grace to work through the changes, we can better process any emotions that may arise.

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.