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By Cara Brady
“I didn’t want to be a bother to anyone.”
Sarah knew ‘complex chronic illness’ (also called complex chronic diseases) before she knew it had a name. There has been despair at living with no diagnosis, fear that it might somehow be her own fault, and disappointment with various treatments. The mental health impacts have been varied and significant.
Sarah (not her real name) grew up in a family of six children in Texas in the 1960s. Her youngest brother had a severe genetic disorder and took much of her parents’ time and the family income since there was no medical insurance.
“I was sensitive to my mother’s depression and my dad disappearing into alcohol,” said Sarah. When she was 14, her parents separated, and she and her brothers went to live with her mother in a small apartment.
“There was no room for me. The summer I turned 15, I left Houston with a girlfriend to hitchhike. At the end of summer, I was living on a beach in California, sleeping under a pier. I was arrested for panhandling to buy food and sent home.”
She tried going back to school but couldn’t keep it up. Then she found work as a live-in nanny.
The next summer there was another hitchhiking trip and she returned exhausted physically and mentally.
“I didn’t want to be a bother to anyone, so I worked at various jobs, including as a caregiver in a senior’s dementia ward,” she said. “I always enjoyed caregiving. It was the one way I felt appreciated.”
“I was becoming aware that I needed help.”
Sarah met her first husband, a Canadian, when she was 17 and they went to Winnipeg. They separated and Sarah moved to Toronto when her son was three. It was a difficult time with physical and mental health, but she kept working.
“I was tired, had headaches and pains in my legs. I was becoming aware that I needed help. I started counselling and body work with a body-oriented psychotherapist. I realized that I blamed myself for my parents’ divorce. I blamed myself for needing anything that caught their attention and for the times I was angry and fought with family members. I just wanted a happy family.” Sarah cried during these sessions, but they brought some relief.
“It helped to access the pain held deeply in my body from my childhood and I began to grieve some of the old trauma, self-blame, anger, and pain.”
In her late 20s, Sarah trained in massage and body-oriented psychotherapy and began her own practice. Her health was still not good, and she had contracted Epstein-Barr virus, which left further complications.
“I met my dear friend Kevin then. I cared for him during the final six months of his life until he died of AIDS.” At 31, she was exhausted physically and mentally and grieving as well.
“My health hit a wall. The deep emotional, physical, and spiritual loss in my life was the most difficult.”
“The challenges of living with an undiagnosed illness.”
Sarah’s son went to live with his father, and she moved to rural Ontario to work in massage and counselling with a spiritual focus and took courses in palliative care and psychology.
“I struggled with fatigue and increasing health concerns. It took all I had to continue working. But I was determined.”
Sarah lived quietly for two years, continuing to learn about her own health and how to help her clients. At 36, she met her second husband and moved to British Columbia where she began her practice again.
“There were still the mental and physical challenges of living with undiagnosed, on-going health issues. I was diagnosed with fibromyalgia, which was not taken seriously at the time by many doctors.”
“I felt sometimes that it must be me, something in me that I just needed to figure out, maybe I was broken or maybe it was all in my mind. I felt stupid. Popular books at that time were about positive thinking and that it would fix things.”
“Some suggested that if someone was ill, it was because they had a hidden desire for attention or even wanted to be sick. This is like saying that if I cannot get better, it must be because I do not really want to.”
“Complex Chronic Illness is just that ─ complex.”
Sarah, working in wellness therapy, felt embarrassed and ashamed of being unwell.
“I had tried for years to keep up with others. I pushed past fatigue and pain until I crashed. Then I would get up and do it again, over and over.”
Sarah thinks her husband did not understand her challenges for a long time. “We fought a lot. I needed help but could not find it for years. Complex chronic illness is just that ─ complex. It can often take years for a diagnosis, or, as in my case, more than one diagnosis.”
“Being able to be gentle with oneself and listen to the body is the kindest way we can be with ourselves and others who are hurting. Hurt is hurt.”
She tried many different therapies, cut back on over-simulating activities, and worked less. When she was 53, she was very ill with no known cause. Then her father and older brother died not far apart, and she was not able to be with them or there for her family.
“It was a very scary time for myself and my husband. I was finally diagnosed with Ehler’s-Danlos Syndrome, a genetic disorder that weakens the connective tissues throughout the body and can also affect blood vessels and organs and progress with age.”
“This helped explain the pain in my body and my doctor prescribed effective medication.” She was also diagnosed with another serious, little-known condition called Atypical Cystic Fibrosis, which affects the lungs. She retired that summer.
“I knew my future with cystic fibrosis would be different than I hoped, so I sought counselling to help me manage my fears around this diagnosis.”
“I think I am managing pretty well now, all things considered.”
“Now at 67, I am kinder to myself. On difficult days I am able to let go of what does not have to be done. I rest. I cry if I need to, go for shorter walks. I let my husband and those close to me know how I am.”
“It still scares me how bad I can feel in body and mind on ‘flare-up’ days, but I have more trust in the body’s wisdom. When given a chance, this body lets me know that when I pay attention and am kind to it, recovery comes along. I think I am managing pretty well now, all things considered.”
She is now taking part in the Clinic for Complex Diseases Program, a provincially funded program at Women’s Hospital in Vancouver, B.C. This physician-referral-only program gives people living with Complex Chronic Diseases (especially fibromyalgia and chronic fatigue syndrome) information and tools for self-management. It is an on-line course in a group setting facilitated by therapists and health care professionals who are specialists in this area of health care.
Healing with a Japanese Bowl
Sarah also finds deep meaning in a song called Japanese Bowl by Peter Mayer about the Japanese art of kintsugi, mending broken pottery with gold so that it is more beautiful than before. She hopes that people who are living with Complex Chronic Illness will listen to this song and ask themselves these questions:
- How am I different now than before the onset of this illness?
- How does my bowl (self) look now that it has been mended?
- How am I more beautiful and precious now?
- How am I more resilient now?
Cara Brady has been a professional writer for newspapers and magazines for more than 30 years. She has always enjoyed helping people tell their stories.
Resources
Complex Chronic Diseases (CCD) Program offered by the BC Women’s Hospital & Health Centre
Fibromyalgia Association Canada
Canadian Lyme Disease Foundation
Discussion Questions
The questions below will help stimulate discussion among family members, friends, groups of seniors, and with health care providers.
- How do you understand complex chronic diseases? Do you think they are common?
- How might complex chronic diseases affect a person’s mental as well as physical health?
- Do you know anyone with complex chronic diseases? How does that person manage?
- Why does it often take a long time to get a diagnosis?
- Do you think Sarah’s unsettled childhood played any part in her mental health as she struggled with undiagnosed physical conditions?
- Why did she feel broken and stupid with something that was beyond her control? Why did she think she should be able to fix herself physically and mentally?
- What part did attention to her mental health play in her life after correct diagnosis and appropriate medical treatment? Do you think that the Clinic for Complex Diseases Program funded by the provincial government should be available to more people?
- What do you think Sarah has learned about managing complex chronic diseases? Can this be applied to living with complex chronic diseases with other causes?
- Do you think Sarah is in a good place with her mental health now even as she deals daily with the physical effects of her illness?
- If you have listened to the Japanese bowls song, what did you think about it? Why do you think it is meaningful for Sarah?
- Has your view of illnesses such as fibromyalgia and chronic fatigue syndrome changed as a result of reading this article?
- Is there a person or particular group of people who would benefit from you sharing this story?