Grappling with My Identity as a Scleroderma Patient

It’s been an eventful couple of weeks.  

I am currently dealing with several crises at the same time, all of which include seriously unwell significant others. My mother has been making an excellent recovery, but unfortunately, other people in my life have been facing life-changing diagnosis and treatment. There have been many trips to the main hospital in our city, sorting through information and listening to my family’s concerns about the care of our loved ones.  

It’s strange being chronically ill while trying to support others who are facing acute, life-changing situations. My thoughts and feelings are often overwhelming, but I’ve noticed some sneaky concepts and ideas that are unhelpful for everyone, including me.

I was a counselor in the past, and I have found it extremely difficult to take off that particular hat. I often find myself stepping into an old pair of shoes that no longer fit. I slip into “counselor think” without realizing it, which many people may see as coming in handy. While it has been great to use my counseling knowledge for myself, it becomes draining when I automatically find myself stepping into the same role for others.  

Counseling is not just actively listening to the client, though that is certainly an important aspect. There are many other things a professional therapist must attend to, such as the client’s behavioral patterns and body language. We must attend to our internal process so we can avoid traps like overidentifying or colluding with the client. It is also important to avoid judging the client or allowing our own views to interfere with the client’s process. All in all, it is different from listening to and supporting a friend or family member, and far more draining.

My compulsion to unwittingly step into my old counseling role has been problematic. Only when I am close to being totally devoid of physical, mental, and emotional energy do I realize how vital it is to step back and evaluate what is going on.

I strongly believe that good self-care is the mainstay of managing life with chronic illness. Part of my self-care was giving up my work as a therapist because, as a scleroderma patient, I didn’t have the energy to do it properly. It astounded me when I realized that I’ve been stepping back into that role.

I’ve become aware that a big part of my identity is no longer possible because of my illness. My task is to find a new way of supporting others as Kim Tocker, scleroderma patient, and not Kim Tocker, counselor. It’s tricky. There is a gap inside of me that is counselor-shaped, and it is difficult to fill. However, I’ve realized that I must modify that gap and create a different shape that I can grow into.  

If it weren’t for this realization, I may have behaved like a counselor for years, damaging myself in the process. That would have been the opposite of self-care, benefiting no one.

I will be watching myself carefully over the next few weeks. I don’t feel like I’ve defined exactly who I am yet. It is a work in progress. A weekend in Akaroa to journal about the process of altering my identity may be in order. After all, many things can be achieved when I can soak in the sea air and allow the winds of change to blow through me.

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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 Services, and are intended to spark discussion about issues pertaining to scleroderma.