I started writing a blog post months ago about my current decline, new symptoms, new diagnoses, horrible and risky testing that I’m trying hard to avoid, and even more horrible and risky procedures and treatments. I never seem to be able to conclude an entire post, but, luckily, my friend Caroline is in exactly the same position. It’s almost unbelievable how closely aligned our current situations are, including the same doctors (we first met for a quick coffee while we were both in California from out of state to go to the same clinic), the same offers for testing and surgery and the same reluctant mind sets (the latter feels most important because I have one person who gets me).

Caroline has written such a clear and astute account of the mental gymnastics we go through when coming to terms with structural diagnoses and the agonizing decisions that need to be made when weighing the devil you know against the one you don’t.

So, thank you Caroline for writing this update for both of us! And for my friends and family: If you’d like to know what’s happening with me, just read this and everywhere she has written “urinate,” replace it with “poop” and you’ll get the gist of my life.

The reluctant patient

I am exhausted from being a patient. In the early days of my illness, I kept a journal, tracked symptoms, and made schedules. Now, I cannot be bothered on most days, but recently I have had to re-engage with my medical care due to declining health.

For years, I actively pursued tests that might shed light on why I feel so poorly. One of the most annoying aspects of having ME/CFS is that we look so normal on paper until you start digging into advanced testing. It is a strange place to be, to want positive test results that point to new treatment directions while at the same time hoping that nothing is seriously wrong. If a test comes back positive, I remind myself that knowledge is power. If it comes back negative, I can rule out a condition. Each investigation brings me closer to the truth behind my illness, regardless if it is negative or positive.

Over the years, my strategy has changed. Rather than pursuing medical explanations for each new symptom, I put my head in the sand, hoping it will all go away. Yet new symptoms are usually a harbinger of decline, especially when they settle in permanently. Ignoring symptoms when it gets to this point is rarely a winning prospect.

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