Losing My Independence Due to Scleroderma Has Been Challenging
I have always thought of myself as someone who thrives on being independent. But living with scleroderma does not afford me that luxury.
Scleroderma is a major component of my life. Plainly speaking, it’s not something I can stash away or bring out when I want to, like a party trick. I wake up and go to bed living and breathing in a body that is slowly dying.
While learning to grow as a person with scleroderma, I had to accept that there are things I can and can’t physically accomplish. I went from being an active 19-year-old who swam, danced, and went to the gym three times a week to having a hard time walking up a flight of stairs.
These last few years, my physical deficits have become more noticeable and less manageable. I suffered a flare-up during the height of the COVID-19 pandemic a couple years ago. While working my way back to my old self, I noticed that my body wasn’t cooperating. I was out of breath more often than I’d ever been, and my strength and stamina were considerably less than in previous years. I didn’t understand how I could go from having so much energy to feeling like I needed a nap.
My doctors ran tests and found that my heart had stiffened, which prevented it from functioning at full capacity. I also had developed hypertension.
Discovering that my heart was literally broken wasn’t so bad. What hurt the most was that I now needed to depend on people to help me with things I previously could do on my own. Little by little, my parents began to help me with more and more things. I had a hard time making my bed, so they helped. I could no longer walk to appointments due to shortness of breath, so my parents bought me a wheelchair. I would get lightheaded and out of breath in the shower, so my dad installed railings and grab bars.
Over time, I started to notice my independence fading away. Feeling like I’m my own person is extremely important to me. Both helping others and doing things for myself are concepts that were ingrained in my DNA from birth. One of the biggest examples of this is enrolling in nursing school after I graduated high school. For many years, I learned to be positive, embrace change, and accept my life — scleroderma and all.
Now the foreign concept of losing my independence and relying on others was causing me to struggle. I couldn’t imagine my life without my independent identity.
It has been years since I had to bring on support to help me with daily tasks, yet there are still days when I struggle to ask for help. Sometimes I refuse and end up doing too much. In dealing with either scenario, I suffer the consequences. I am either exhausted and in pain or angry at myself for being unkind to those helping me.
I am still working on ways to live independently while also leaning on others for help when needed. It is a concept I will embrace, but it’s taking a little longer than I would like.
The takeaway from this is that I know that I can’t change what is happening to me. I know scleroderma will never go away, but it will make me a stronger person in the end. Of everything I’ve lived through — finger amputations, lung fibrosis, and body stiffness — losing my independence is by far the hardest. But in the end, my time on this earth means more to me than my pride.
So I will overcome this just as I have everything else. Step one is to fully embrace my family’s support.
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.