I am one of millions of people living with a chronic illness. In my case it’s fibromyalgia. Living with fibromyalgia is not easy. The peaks and valleys between feeling good and suddenly having a flare-up of symptoms is overwhelming. Sometimes I feel like I lost myself. I feel like I'm kind of gone. Like I've been lost in the mess of life with chronic illness. Like all that I prided myself on is gone. I feel like so much of me has disappeared, has been stollen by chronic illness. And the longer I'm chronically ill, the more I feel like I am losing of my core identity.
Those of us with invisible disease and/or disabilities often deal with being misunderstood, and even judged. It doesn’t help that the disabilities caused by Fibromyalgia are not always outwardly visible to others. In the support groups that I have joined, it is very common to hear stories of Fibromyalgia patients being questioned when they park in a handicapped parking spot or use a motorized shopping cart.
People living with chronic disease may cancel plans, or ask to join them, at the last moment. This can make us seem unreliable or flaky. But we never know if it’s going to be a good day, a harder day, or a day when we can barely get out of bed. There is a popular quote among the chronic illness community that illustrates this point perfectly: “Just because I could yesterday, doesn’t mean I can today. But just because I can’t today, doesn’t mean I won’t be able to tomorrow.”
Living with this uncertainty can cause people with chronic illness to become anxious and/or depressed. In fact, the prevalence of depression in those living with fibromyalgia is two to three times higher than in the general population. Numbers are similar for other chronic diseases. According to the Cleveland Clinic, “An estimated one-third of people diagnosed with a serious, life-changing chronic illness or disease will experience symptoms of depression.”
When you are diagnosed with a chronic illness, you have to mourn the loss of the body you once had. You may experience stages of grief such as denial, anger, bargaining, depression and finally acceptance. I have grieved for a body that was reliable. A body that had energy. A body that I could count on to feel good a lot more often than it felt sick. Living in this time of “wellness” can also be challenging for those of us living with a chronic illness. This culture places a heavy focus on personal responsibility that can feel toxic when it is used to shame or blame a person for their chronic illness.
How badly do you want to get better? is the message that is commonly used to sell diets, supplements, coaching, etc. I embrace all modalities of treatment for my fibromyalgia, including holistic treatments, but I have found that I am the most at peace when I am seeking the acceptance stage of grief.
When I accept that I am living with a chronic disease and try to make the best of the situation, rather than seeking ways to “heal” or “cure” my incurable disease.
When I am in a flare and my whole body is in agony, I am far from the realm of radical acceptance. I am just trying to survive moment to moment. I am learning, however, to radically accept that I will not know how my body is going to feel on any given day. This for me also means not looking too far ahead into the future and living in the present moment as much as I can. Feeling unwell much of the time makes you aware of life’s fragility in a much more immediate way. It also makes you appreciate those good days in a way that others may take for granted. Nothing in life is guaranteed. What really matters is how we treat each other. This simple everyday interaction reminded me that sometimes I can rely on people, even strangers, to be understanding about my “invisible” disabilities.
All humans, not just those of us with chronic illnesses, face trials, pain and struggles that are not always visible on the surface. We can never know by just looking at someone what they may be dealing with. The uncertainty that comes with living with a chronic illness has been very difficult for me to accept, but learning to live with it has given me more empathy for others, as well as more patience with myself.
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