It’s been 35 years since I developed the first symptoms that were eventually identified as signs of Multiple Sclerosis. Over the years, I’ve developed other autoimmune diseases and syndromes and when I think about it, all I can say is that it’s been a slog. Illness has taken up too much of my life: the time spent trying to figure out how to get things done while my body screamed with pain or the need to rest, time spent searching for diagnosis and getting treatment. Too much of my life’s identity consumed being a patient.
This past year, I’ve been healthier than I’d been for the previous 6 years. And guess what? Being healthier, I felt a little lost. Now that my life wasn’t consumed with taking care of myself, I could focus on the fun stuff — family, friends and work . But I didn’t slip into this easily. I found myself wondering who was I, now that illness no longer consumed my time?
Funny thing is that once I realized what was going on, I recognized a familiar place. I’ve had several long bouts of even worse health issues than this that were then followed by periods of ‘normal’. Each time, I have to recalibrate who I am. I find myself questioning my work (is it enough, am I good enough, what do I want to be doing?), my family (do I give them my full self, am I pretending to be what I’m not, am I hiding behind illness?), my friends (do I know how to be a good friend now that I’ve got the energy for it, do they know how to be a friend to a healthy me?) This time I had to dig deep into the pockets of resilience that are still there.
I think this ‘off balance’ response to moving into a healthier state makes sense when you live with debilitating chronic health challenges. As health waxes and wanes, your identity shifts to adjust. It makes sense when I think of it. But it’s tricky. I watch as my clients struggle to adapt and I tell them (and me) that this is another example of why resilience is so important.
It’s helpful to know that this is necessary. I don’t ever want my identity to be wrapped up in being a sick person. And, certainly , even less so, when I’m in a healthier state. But knowing this doesn’t make it easy, does it?
Leigh Peltier says
Thanks Rosalind. I really needed to read this. I’m feeling great and just am STUCK at work. I don’t know why and don’t know that it’s specifically what you wrote of, but I do know that I’ve lost my identity. It’s frustrating. Thanks for being so timely.
Rosalind says
I’m delighted this resonates for you.
Karen Karper Fredette says
If we were playing one-upmanship (which I sincerely hope we are not) I just wished to comment on how chronic illness and life intersect for better or for worse. I developed what was later diagnosed as fibromyalgia over 40 years ago and have lived 3+ lives since. At first, I didn’t know what to do but be a semi-invalid in the monastery (I was a nun) which had no place for such. I kept my assignment as Director of Novices and managed the classes and personal supervision required, sometimes from my bed. Later, I was removed from that office and became an “invalid” during my latter 30’s, early forties. I spent a lot of time trying to find meaning to what I was enduring … “you can put up with any “what” if you have a “why”. I found my meaning in Scripture, particularly the writings of St. Paul. (2 Cor).
I began to realize I loved the solitude I had found and eventually left the monastery to become a hermit. (See my book: “Where God Begins to Be, A Woman’s Journey into Solitude” (Karen Karper) My health improved once I could control my routine and diet.
I fell in love with a priest and he with me. We moved to the Smokey Mountains to discern what was happening and eventually married. (See my book Where God is Ever Found, From Cloister to Couple, A Woman’s Autumn Journey- Karen Karper Fredette). About four years into our marriage, the fibromyalgia began to worsen again, and I’ve been coping with the help of various pain medications since 2000. Fortunately, my husband is a compassionate man. I’ve never said I retired but rather that I work full-time at home, managing our ministry to hermits (Raven’s Bread, Food for Those in Solitude), which includes 1100 readers of our quarterly newsletter, a website ( http://www.ravensbreadministries.com) which garners close to 1,000 hits daily on average, and a blog for Lovers of Solitude (www.ravensbreadministries.com/blog) which is growing well. In addition, my husband and I produce fabric art – quilted wall hangings. Given the above, I don’t have much time to focus on the FM, except to be careful not to get overtired. My passion is writing … as you may have guessed. Paul and I have co-authored, “Consider the Ravens, On Contemporary Hermit Life” which garnered a bronze medal at the IPPY awards. I’ve recently allowed myself to write fiction in the form of short stories which is my “escape” when the stress and pain get overwhelming. I refuse to identify myself by my health (or lack thereof!). At the same time, I am learning to be very scrupulous about keeping my husband “in the loop” so he knows when things are tough. He wants to be supportive but he needs for me to let him know where I am. Most of my friends know about my fibromyalgia but I am very careful to keep it low key. I refuse to be identified by this syndrome. I am more than what I feel, more than what I do. I prefer to identify myself as a writer, if I must say anything about my life. Thanks to FM, I live a deeply rooted and highly aware life. I am able to meet people in their pain … of any kindl. How have you dealt with concept of self-identity and your chronic illness.
Rosalind says
Thank you for sharing your insights into this life.
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Rosalind says
I’m delighted you like this. You might like the collection of blog posts in my “Career Thrive Series” as well – on my website, https://cicoach.com/resources
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Rosalind says
I’m always interested in guest posts. Use the contact page on my website to email me and I’ll tell you next steps.