By Joy Selak, Columnist
Over the last two decades, I’ve learned a lot from being sick — how to make lifestyle changes, access better health care, stand up for my needs and rights, and be more sympathetic for the suffering of others, to name a few.
But one of the most important lessons illness has taught me is the need to grieve. In order to build a meaningful life that contained illness, I had to let grief take me to my knees, and mourn the loss of the person I once was and the life I had planned.
The American health care model is based on fixing things and the more dramatic the intervention, the better. We speak of illness in the language of war. We fight it, we vow to beat it, we refuse to let it defeat us. Surgery, expensive diagnostic equipment, revolutionary new therapies are all valued. People who stay sick are not valued.
Given this model, it is understandable that during the early years of illness most of us believe in time our trial will be over, the doctors will figure it out, the treatment will finally take hold, and life will return to normal. The word “chronic” is not yet part of our vocabulary.
For me, the day finally came when I had to admit, “The life I had is gone. I will not do all the things I planned. This illness is not going away.”
That admission broke me and allowed me to grieve. It first happened when I had to leave my professional career and apply for long-term disability. It happened again two years later, when I finally won the claim and was deemed officially disabled. And it happened yet again a few years after that — when I got another, painful chronic diagnosis on top of the three I already had.
I learned to let the grief take me and last as long as it lasted.
When I came up out of the dark, I had a question to answer. “If I can’t be the person I planned to be and I can’t have the life I planned to have, who can I be? What can I do with this life?”
My grief became the foundation upon which I built a new and meaningful life with illness.
I see a lot of rage among patients, especially those in pain. It’s understandable; pain patients have very real complaints and our health care system needs to change to better serve us. But sometimes I think the rage that goes on and on, like an endless scream, is also a way to avoid the need to grieve.
There are big losses in life — a divorce, the death of someone dear, and long-term illness. All these losses alter the future forever. All require and deserve grieving as part of the journey. We can’t begin the next chapters of our lives until we do this necessary work.
There are blessings in the quiet life that illness demands, but unless we travel the deep, dark passageway of grief, we are unlikely to find our way to them.
Joy Selak lives in Austin, TX. She has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.
Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the four phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well — and is written from the alternating perspective of a patient and her physician.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.