Readers of this column know that I often write candidly about family situations and experiences.
Just last month I trekked to cold and snowy Boston to care for my sister. She is ill with a chronic disease. There is much I’d like to write about her situation.
For example, there’s the financial impact of a disease whose treatment requires a drug that costs $3,000 per month. Or the dynamics of living with a condition that forces the patient to be homebound, prompting other family members to assume new roles. Or the critical reliance by the patient on an array of medications, despite a desperate wish to be off all of them.
I want to write that column— but I’m hindered by the feeling that my sister would be embarrassed. I know this all too well because I had the same disease in my teenage years, and my other sister had it in her 20s. Clearly there’s a genetic link, but it doesn’t negate the feelings of shame that each one of us feels, or has felt.
As a teenager, I remember being fearless in telling my classmates about why I had to be home-tutored or why I had chipmunk cheeks (from the steroid prednisone) or why I had an all-access hall pass to the bathroom anytime I needed it.
I think my mother was mortified by my disclosure. She was embarrassed by my illness and probably felt somewhat responsible because of the genetic component. I’m sure she wanted her daughter to just “be normal,” especially in the challenging teenage years.
What I learned was that chronic illness is something to be embarrassed about, and the more “normal” you could look or act, the better it was for everyone. That’s too bad. My doctor gave me one of the best medicines for my embarrassment: He connected me with another of his patients with the same disease, a boy a few years older than me. Being able to share my shame, fears and concerns with someone who “got it” was tremendously healing.
It takes a lot of energy to manage a chronic illness. I never knew whether I was going to have a good day or a bad day. I felt very alone and was very depressed and stressed. Back 40 years ago, stress was considered one of the causes of this disease, so everyone kept telling me not to stress
Fate intervened and emergency surgery created a cure. Some like my youngest sister, go into remission, and some, like my middle sister, deal with the disease throughout their lives. Being an optimistic sort, I’m thankful to my bout with chronic disease for giving me the empathy and understanding to support my sister in her battle.
As I get older, I know it’s just a matter of time before I develop another chronic illness.
Nearly 92 percent of older adults have at least one chronic condition, and 77 percent have at least two—diabetes, heart disease, cancer, hypertension and a plethora of other possibilities among them.
I am sure at that time I will feel embarrassed and responsible for my body’s failure. It will take courage and determination not to let myself feel that shame long-term. Acceptance takes time.
I am thankful I could be with my sister. Besides medical treatment, I don’t think there is anything more powerful than breaking her isolation, sharing laughs and offering her someone who understands.
