Grappling with My Identity as a Scleroderma Patient

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.

***

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.

I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.
×
I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

5 comments

  1. Pam Hopp says:

    I enj Pamoy your weekly columns, especially since none of my family and acquaintances have neither heard of Sclerodema or know anything about it.

    • Kim Tocker says:

      Hi Pam – thanks so much for your message – I really appreciate hearing from you and I hope my writing is able to help raise awareness for your family and friends. If others can understand about it, then it can make things a little easier for us as encouragement and understanding from others helps so much. It isn’t an easy disease to live with – but we do the best we can and support is so important. xxx

  2. Ron Sasso says:

    Kim, as a fellow counselor with scleroderma I understand the struggles. I knew because of my own struggles with depression (post diagnosis) that I wasn’t in shape to work as a counselor (and we spell it differently in the United States).

    A little less than a year prior to my diagnosis, I worked as a program director for an outpatient brain injury rehabilitation center. I occasionally presented at regional conferences on the emotional aspects of brain injury (loss of self being a huge aspect as well as stress management). It still took me a while to realize that those things I taught I needed to implement in my own life. It is an ongoing challenge.

    I am less than four years in since my diagnosis. Currently my diagnosis is sine systemic scleroderma. I say “current” because I suspect that I would have limited if it were not for a high dose treatment of prednisone in my first month that put a quick halt to the progression. I am scl-70 positive. I am doing really very well so far, but I know the disease is there and is still stalking me. I have so much less energy that I know I am a shell of who I was. When having a good day I have learned that I cannot take on more things in the future just because I am feeling good that day…tomorrow I may not be.

    As a counselor it is easier said than done to take care of ourselves first. Old habits often rear their head. Becoming aware of it is the first step toward change.

    I will say prayers for you in what you are dealing with. Dealing with sick family members is difficult because it’s next to impossible to shut off emotions.

    • Kim Tocker says:

      Hi Ron – so nice to meet you. It’s such a challenge to to take off that hat isn’t it? But I totally agree with you about the need for self-awareness – it’s really important to attend to this in order to stay grounded and understand your own process. I’m grateful for my past experiences as a Counsellor, and I’m so pleased I have been able to learn so many aspects of good self-care through working with others on that issue, but as you say, it is just so important to take that on for ones self when chronically unwell.
      Hang in there – I’ll also be sending you healing loving vibes from one Scleroderma Warrior to another. It’s so important to keep on encouraging and lifting each other up. Thanks so much once again for your message.

  3. Carla says:

    Hi Kim!
    I really needed to read this today. I was diagnosed about 7 years ago. I have limited SSc. I was a dental hygienist for 31 years and had to quit working for the many issues I was having with my body.
    I too have been dealing with family members with health issues. My daughter is a medical social worker who reminds me about self care when my extended family stresses me out. It is a hard balance to try to take care of others and not forget about yourself. Thank you for sharing your story.

Leave a Comment

Your email address will not be published. Required fields are marked *