Releasing the Shame of Chronic Illness

My three siblings are poised to converge on my city this summer for my grandmother’s 100th birthday. We are not a close family, emotionally or geographically. I see them rarely. I’ve been in chronic pain for the past five years, and though two of them have passed through town during that time, our short visits did not allow them to fully grasp the extent of my pain and limitation.

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It will be more apparent this summer when they are here for a longer stay. I will have to opt out of a lot of the activities. What I most regret is that I won’t be able to make the two-hour drive to my grandmother’s small town for her birthday celebration, and will miss the extended family gathering. This has also triggered feelings of shame, which surprises me; illness is no cause for shame. But I see now that it has long been there, greatly compounding my suffering.

Much of what we value in this culture – strength, independence, vitality – depends upon health. Others may pity, judge or blame me for having less of these qualities. If I internalize this, I feel vulnerable and inferior. This in turn makes me resentful of the healthy, embarrassed before them and angry. None of this is pleasant. It’s time to set down this load.

I was once proud of my health. I took credit for it, assuming it was the result of good habits. Once chronic pain set in, I could have noticed I did not have the power I imagined. But I held onto the illusion of control. Hence my pride turned to shame. Deep down, I felt I was to blame: I wasn’t eating perfectly, or thinking the right thoughts, or doing the right things. Perhaps it was simply bad karma. But somehow, my loss of health both confirmed and exposed my inferiority.

My siblings and I are in our 50s. They embody “50 is the new 40” – healthy and fit. I am not. They are successes in a family that places high value on such. This brings up feelings for me of failure, of being the one who wasn’t quite as smart, a little different, misguided. There’s probably not much truth in this. They, too, might claim to feel the same. But unlike the fit and healthy, I can’t hide or compensate for those feelings with a shiny exterior and busy life. I feel that my hurting, limping body reveals what I fear I truly am – a failure, the one left behind.

Along with the shame comes some resentment that none of my siblings really
understands what I’m going through nor cares that much. But we are not a close family. If our roles were reversed, I would care, as they do, but I would probably still keep my distance. So they are not to blame; they are neither the problem nor solution.

But this shame – it would be nice to see that go. So I will look straight at it, see it for what it is. I will allow myself to feel old, weak, washed up. I will freely contemplate the full extent of my physical limitations, the intensity of my pain, the fear of the future. Writing helps, too, both public and private.

I will air all of the reasons I feel “less than.” I cannot walk briskly, work out, travel or do yard work. I am not as “useful” as I once was. I cannot sit comfortably for long; I’m embarrassed about my butt pain. The house is not pristine clean. I’m not as well groomed, pretty or fashionable as I was. I don’t have the time or energy for that. I know it’s enough that I am presentable and the house is in order. But shame still lingers. Again, this is because I took pride in these things. I must disown that former pride. My former energy, zest and abilities were not of my doing, but by fortune and grace.

As I give voice to these feelings, I see that none of it has basis. I did not cause my illness or pain. Shame implies fault. There is no fault here. In fact, there is basis for pride, legitimate pride, that I continue to face each day. It takes strength and courage to keep going. I am not a failure. Gratitude arises, too. I am grateful that I can still walk. I can type and drive for short errands. I sleep reasonably well. My mind still works.

It will take time and attention to release the old feelings of inferiority. But the process has begun. It’s hard enough to meet the daily challenges of chronic illness without internalizing lies. We can lighten our load by releasing the shame, and gain even more strength by recognizing the truth: We achieve amazing things every day just by showing up, by loving someone, by learning the day’s lessons and simply by being who we are.

The more I learn to love myself and this life, the more genuine my smile will be upon my family’s arrival this summer. I will love them, be with them as much as I can, and enjoy their company. If I can’t do all that as fully as I’d like, I will “act as if.” And with practice, I will soon comprehend the truth that I am quite amazing. I am a shining success and have nothing to hide. This world wants me here, and I, in turn, am glad to be here, exactly as I am.