Living With Chronic Illness: What I Wish People Knew

One hundred and fifty million Americans live with chronic illness.  One hundred million Americans live with more than one chronic illness. The number is on the rise, with immune disorders leading the statistic. I am among their number. Here are a few things I wish people knew.

Chronic illnesses are more than the sum of their parts.  There is a weird math to chronic illness; one plus one equals at least three. 

Chronic fatigue often accompanies chronic illness.  It is not the kind of fatigue that goes away with a nap or a good night’s sleep. It is a fatigue that clings like a second skin.  Diseases sap strength. Having to cancel plans at (almost) the last minute is common, and going beyond personal limits has consequences.

Most chronically ill people are not independently wealthy. Money is a constant worry.  The ever changing health care scenario creates worry about drug coverage and being able to see specialists who may not be in one’s insurance network. Potential cuts to benefits raise questions about meeting regular expenses. As the Occupant and his cronies try to raid Social Security and Medicare, there are many questions and concerns.

Depression is very much a part of chronic illness. It is chronic and deep. While it does wax and wane it is never fully gone. Depression is not a sadness that one can snap out of. It is not quelled by happy experiences or good times.  It is a chemical consequence of living with chronic diseases and is itself a chronic disease.

Brain fog is a real part of chronic illness.  Multiple medications are often part of chronic illness. How these medications interact with each other is often not known.  The result is an inability to concentrate on conversations, books, movies etc. What days will be brain fog days is not predictable. 

Chronic grief is part of chronic illness.  The losses that go with illness are too many to list and they surface at unexpected times.  The losses are not grieved once and put away, but return again and again as the limits of new life are accepted. The world gets smaller and a lot of things are lost along the way.   

Chronically ill people often don’t look sick.  It’s a mixed blessing. This means it’s easy for people to dismiss the chronic pain, exhaustion and brain fog that goes with chronic illness. On the other hand, passing for some semblance of normal from time to time is a plus.   

These diseases will not go away.  There is no magic potion to restore the health known in the past.  That said; there are unexpected gifts and graces…it’s not all bad. Taking fewer things for granted and learning to be grateful for every day top the list. Learning to be present to the moment, even when the moment is hard is an ongoing process, and it brings its own unique insights.

There is no question that my life has not turned out as I planned. After four years of figuring it out, I can honestly say it’s okay.  Sure, I miss my old life but my new life is pretty good.  This is not some Polly-Anna BS.  It is the hard won fruit of honest emotional and spiritual work, the companionship of a small group who hold me together when I am falling apart, and the graciousness of God whose presence affirms my worth even when I feel worthless.

Chronic illness comes like a thief in the night and takes a lot.  I am learning that beyond the profession by which I largely defined myself, there are other realities that add richness to life. I continue to reinvent myself and while the new me is far from improved, it’s okay.

If you live with chronic illness or are a caregiver for someone with chronic illness, what are the things you wish people knew?

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6 thoughts on “Living With Chronic Illness: What I Wish People Knew”

  1. Pat, thanks for the reminder to truly appreciate the good days whether or not one is dealing with a chronic illness and to not take good health for granted. I too will be forwarding this this to a long time friend who has had to reinvent himself over the past few years.

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  2. Yes I agree with you but I also worry about going into a nursing home as my chronic illness progresses. I worry about my caregiver and feel it is not fair to her. Depression iit comes and goes but never goes away.

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