Category Archives: ME/CFS

I Wish I Were Sick

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Seriously? Nobody wishes they were sick. Well, maybe when you were a kid, and you just didn’t want to do something such as go to school. But now we’re all adults, and we don’t have to go to school if we don’t want to. So what’s going on here? 

As I was waking up this morning, I moved around in bed to see if the vertigo was acting up. Yep. How about brain activity: present or absent? Present but minimal. Energy? Ha. Lost track of that months ago. Should I call the doctor? Ha. I could say something like, “I don’t want to go to school today.” And she’d say: “Get dressed and get out of here.” 

Seriously. What is this? Is this what it feels like in the months leading up to a diagnosis of something serious? Or is this what it feels like to have one of those chronic things that never gets a name? If it’s the former, OK, great. At some point, I’ll get a diagnosis, and the amazing American medical machine will gear up to poke me and prod me and take images of me and schedule one appointment after another and rack up amazing bills, and maybe it will all work and I’ll get cured or at least get better. 

But: if this is a chronic thing that never gets a name, then what? I could spend my own money trekking around town to various people with various titles (some they’ve bestowed on themselves) who want to sell me various products or procedures or tests that will give me ambiguous results but fail to give my condition a name or a cure. Or maybe they’ll give it a name, but not a cure, but I’ll convince myself I’m just enough better to justify spending yet more money on their tests, products, or procedures. Or maybe I’ll just settle in for the long haul. 

Long Haul? Isn’t that one of the names given to people who caught Covid and failed to fully recover? Yes, Covid Long Haulers. Am I one? I don’t think so. I caught Covid in early August, got Paxlovid, and recovered quickly. Did I recover fully? Yeah, I think so. I don’t remember feeling like this, but we were traveling at the time. When we got home, I was tired from traveling, as usual. I didn’t have vertigo then. I’m not sure what it would feel like to have a fully functioning brain because I’m a bit scattered in the best of times, but I think I felt OK. I was still taking walks back then, so I had some amount of energy. 

But then there was that Covid booster in mid-October. I’d had a bit of vertigo before that, but only as I was going to bed. It wasn’t interfering with anything. Then, the day after the booster, I was sicker than I can describe with the most intense vertigo ever. Better the next day, and the next. Then I saw a PT and got worse (yes, worse). ER, Rx for nausea, and it’s been on again/off again since. I had 48 gleeful symptom-free hours following a massage, but then it’s been on again/off again since. My walking stick is by the door for days like today when I don’t even want to walk to the elevator without it. 

A friend with ME/CFS loaned me “The Invisible Kingdom: Reimagining Chronic Illness” by Meghan O’Rourke. Am I just trying on the experience of chronic illness which she so articulately describes? Oh, please, no. If so, I don’t want this role! Let me out of here! I’ve had other experiences that have taken months and months to right themselves (broken leg, broken foot). But they were so definitive: See this fracture here on this X-ray? We’re going to fix it! And yes, eventually, I was fixed. 

Today, I’m wondering if this was how my father felt in the months before he was diagnosed with a form of chronic leukemia. Was there just a malaise that slowly settled over his life? Was there a pain that couldn’t be attributed to anything in particular? Was his brain less clever than it had always been? I wasn’t home then, so I don’t know what the prelude was like. But today I wonder.

I have a previously scheduled appointment with my primary care doc in two weeks. I’ll find out if the lung nodules that appeared in my ER X-ray have resolved. I’ll tell her that the physical therapist who specializes in vertigo has told me he has no new ideas to resolve my persistent vertigo. I’ll tell her that when my brain is working so hard to figure out where I am in space, it can’t seem to do anything else I want it to do. And I’ll tell her that I don’t want to be chronically ill. What ideas will she have for me? Anything useful, or just a shrug?

Let’s Not Assume Guilt by Association

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Recently, an article crossed my path for a second time, and this time it caught my attention. It was basically a challenge to the self-ID phenomenon that has carried the day in gender fluid circles, but it didn’t stop with that. The author, Jonathan Kay, in his article “The Search to Explain our Anxiety and Depression: Will Long Covid Become the Next Gender Identity,” went on to cast aspersion on “contested illnesses.” It took me a while to figure out how he was linking gender self-ID and his collection of contested illnesses, but the link was his assumption that people could self identify into genders and also into illnesses.

To prove his case, he led readers to the website of an organization calling itself “Body Politic.” Yes, clearly Body Politic is Woke, and yes, it has become a gathering place for people with Long Covid. But Kay, a journalist I respect, has fallen from his pedestal of Rational Critic of Woke on this occasion. I believe he has engaged in the logical error of assuming guilt by association, just one of many traps we can fall into when we are determined to expose wrongthink of one variety or another. 

I consider myself a skeptic of some of the contested illnesses Kay cites in his article. Yet I have seen one friend who claims EMS (electromagnetic sensitivity) come to a book club meeting and comment to the group that the EMF signals seemed weaker than usual, only to have the leader announce that Wi-Fi was out that night. On another night, she commented that signals seemed stronger than usual, only to learn that the store had bumped up the Wi-Fi signal recently. So now I believe that she really is sensitive to things that don’t affect me at all though I claim no expertise as to her illness.

Multiple Personality Disorder is another diagnosis that many challenge today. Yet another friend from years past had this diagnosis. I accepted this claim of hers with a giant dose of skepticism until I saw her switch during a discussion when I said something that triggered a reaction in her. Her voice changed; her demeanor changed; she attacked me in a way she had never done before. It was all very spooky, and had I not seen it, I would not have lightened my skepticism several notches; yet I claim no expertise as to her mental illness. 

Likewise, I have a friend with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I moved into a condo next door to her one year, but found her reluctant to engage with me. After a couple of years, we were finally friends, close enough that she could disclose to me the physical limitations she lived with. This woman is a retired art teacher and librarian, a gifted artist, someone who enjoyed travel, loves to see art exhibits and go to movies. Yet she can do but a fraction of what she would love to do. Travel is out of the question. And even at home, she is limited to a few hours a day that she can enjoy any of her pleasures. Why would I doubt her? She clearly wants to do more.

My point with these stories is simply that I have been blessed to know, and count as friends, these individuals who are doubted by society. I do not claim to have any special knowledge about their conditions. I have learned from them that it is indeed a hardship to suffer in a way that you cannot disclose for fear of ridicule. It is a hardship to be doubted by medical professionals. And there is a deep need to find others with similar experiences. If you reach out online and a find a group who understand what you’re talking about, you will appreciate their acceptance even if they are Woke. You may find others who are not Woke. You will count your blessings that they are ready to include you without checking your Woke or anti-Woke credentials.

In the year since Kay’s article appeared in Quillette, we have accumulated many more cases and much more knowledge of Long Covid. Researchers  have yet to find agreement on which symptoms are most useful for diagnosis, much less find a cure. Yet doubting individuals who claim Long Covid just feels wrong because the harm of such doubt is serious; it only increases their challenges; in this case it detracted from the rest of the article which expressed concerns regarding more common campus identity issues.

I have no close friends who are trans, but friends of mine have children and grandchildren who are. I write about my concerns with gender identity, and some of what I say brings squinty eyes from these friends. Yes, I have concerns about gender-affirming care that includes hormones and surgery for kids and teens. I have serious doubts about moving men, who suddenly claim to be trans, from a mens’ prison to a women’s prison. (Do we need a trans prison? I don’t know.) I don’t want to harm trans individuals, but harm can come from more than one direction. Jumping on a bandwagon of support too soon (another way to short-circuit clear thinking) can be as harmful as shunning people for things we don’t yet understand.

Young people who are questioning their gender needn’t be turned aside. Engage with them. Sort out all the concerns they have. Good therapists who are concerned about the lack of research in this area have formed the Society for Evidence Based Gender Medicine, SEGM, to support each other as they develop positive alternatives to the gender affirming model of care. Acceptance and engagement is a viable approach that avoids the potential harms of uncritical affirmation or thoughtlessly rejecting a patient.

Because the war against Woke has been so intense, it’s been easy to fall into logical errors of one type or another while arguing against it. Kay went all-out for guilt by association. But confirmation bias plagues us all – all day every day, every one of us. It’s seriously unpleasant to read or watch things we don’t agree with. I try to read from a wide variety of sources, but I only read things that feel “honest” to me. Rants don’t merit my time. Still, I have to discipline myself to take in opinions that are seriously at odds with my current thinking. 

If avoiding logical pitfalls seems important to you, I suggest a visit to Logical Fallacies. This, and other such sites are helpful if you need a refresher course in the many ways our good intentions can pave the road to hell! Even those of us who don’t believe in hell will benefit from avoiding these pitfalls.