3 Soul-Crushing 'Rites of Passage' Chronically Ill People Go Through

If you don’t live in the world of chronic illness, you won’t understand the evil so many of us experience. There is an unwritten path most of us take to enter into this world. Along this path, there are “rites of passage.”

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The first is somewhat universal and it’s called “your test results are normal.” This is usually said by your PCP after you went to 25 follow-up appointments and demanded blood work. The PCP may be mentally high-fiving themselves for putting your worries to bed so quickly. Except, you still feel sick. The diagnosis is often then listed as anxiety, depression or chronic fatigue. I once asked if I was born with chronic fatigue and my PCP said that was “ridiculous.” And then I respond that I thought it was ridiculous that she diagnosed me with chronic fatigue when I was following up after that stroke I had at age 32.

The next rite of passage usually happens at the “specialist’s” office. This specialist may start off by telling you that they don’t treat chronic fatigue syndrome. Then they will order tests because you didn’t magically evaporate after they tried to ignore you and not make eye contact. Unfortunately, when the tests come back, no matter what the results are, they will be either near-normal or incidental.

Once, I was sent for an MRI to look for bulging discs in my c-spine and when I was found to have them, I was told they were incidental. But they ordered the test to look for them because they fit with my symptoms? I digress. Then the specialist tells you to return if symptoms worsen or fail to improve, i.e., they will assist during your autopsy.

The last rite of passage is the most insidious. This is when you encounter the doctor who does the most damage to your medical records, your psyche, and your well-being. This is when you push back and demand to be seen and evaluated by a real specialist. You will have filed multiple complaints and your records will precede you. This doctor will engage in gas-lighting. They will write a note in your medical record that will leave you speechless. They will describe you as hysterical, displeased with their assessment and non-existent treatment plan, and accuse you of malingering. They feel it is their personal job to be a CIA agent, investigator and lie detector test all at once.  The exaggerations in their note will impress the biggest liars of the world. For instance, “she has seen an extraordinary number of providers recently.” Yes, an artery dissection, stroke, immune deficiency, genetic condition, and spinal injury do generate some doctors’ appointments. My bad.

These are soul-crushing experiences, but to eliminate them would require a few things.  First, a healthy person (and our doctors) must admit that that part of their good health is sheer luck. People with chronic illness are assigned a lot of blame. As in, if we exercise, drank more water, stopped taking meds, were more productive, etc., we would not have a chronic illness. That’s just not true. We are blameless. The only responsibility we have to the development of our chronic condition is that it is happened to us.

Second, healthy people and all doctors would need to admit that the amount of effort we put into being well is not related to our treatment response or treatment outcomes.  Again, we encounter a lot of blame. Our doctors and friends will slide in subtle accusations such as “you need to get out more” or “maybe you shouldn’t spend your time thinking about what is going wrong,” etc. On behalf of all people in the world who are experiencing a chronic illness, I would like to go on record and say our efforts do not always matter. Sometimes we are sick of trying and sometimes we are trying too hard. It doesn’t matter, we still have a chronic illness.

And third, our doctors and healthy people alike would need to accept that we do not have to be the single sickest person on the planet to feel sad or upset about our own health. Suffering is not a contest. Don’t assume you know what exactly is devastating when you are not the person who is sick. We do not need to be thankful that our hearts are still beating or that we don’t live in a third world country. Our sadness is justified. And we deserve treatment and care. And a wing of the hospital named after us for all we had to put up with. Maybe a small island in our name, too.