This blog post was originally published on July 16, 2020.

I read something today that, wow it made me mad. It was about a man who had gone in for training for a second joint replacement and was repeatedly passive-aggressively belittled by the instructor because he didn’t fit her preconceived notions of what a joint replacement patient should look like. (He was much younger than the others.) Though the article was entitled, My Loneliest Moment as a Young Person With Chronic Illness, the patient and author of the piece said that 10 years later, he saw the humor and ridiculousness of the situation. I don’t know whether the initial situation or the subsequent dismissal of his own feelings made me angrier.

I had an interesting exchange this week. I signed up for a workshop on motivation with my career coach, Colleen DelVecchio, because motivation is a weak point for me right now. And the longer I go under pandemic restrictions and the longer I go without a job (so in a state of financial uncertainty), the deeper I have to dig for motivation to do anything beyond a state of total inertia.

The workshop featured Sarah Stites founder of the Wavelength Wavelength app, who talked about her weight loss journey, which included some chronic diagnoses, and how she developed her motivation strategies, including shaping goals into achievable pieces, focusing on what you want now (not worrying about the long term), and not feeling guilty for doing things purely for the joy they bring, such as reading fantasy or binging TV shows or taking a day off just because you can.

I have a friend who once told me that I looked better at 180 pounds than I did at 120. I don’t think I ever loved him more than in that moment. He lives overseas and we don’t exchange pictures much, so the difference between when I last saw him here in 1998 and went to visit in 2014 would have been stark.

Like many people, both men and women, I have thought I was fat for most of my life, even when I wasn’t. My body dysmorphia was strongest in high school when, even though I was at a healthy weight, I kept trying to lose more by manipulating my insulin regimen. This is actually an eating disorder. But when my standard of living was overtly threatened by my behavior (diabetes complications), I straightened up and developed a healthier approach.

Well, it finally happened. I know someone who has died of COVID-19. I had been lucky thus far in that my circle of friends and family are privileged enough to not have to venture out of our living spaces. We all have the kinds of jobs that allow us to stay home, and the means to have groceries delivered if that’s what we want.

I didn’t know this person well. He was a close friend of my dad’s, but not someone I grew up with. He was one of us, though, a patient with diabetes and physical limitations, as well as a few other conditions. He often told my dad that he was surprised he lived as long as he had, and he used that as a reason to not follow CDC guidelines as closely as patients have been advised to. He did not wear a mask as religiously as most of us do now. He socialized when he wanted to, without self-restriction. He traveled back and forth between Connecticut and Florida multiple times to see his girlfriend and to play golf, especially as it got colder.

I don’t know how I feel about this.

Mental health and depression have always been issues in the chronic and autoimmune community. Every aspect of a physical illness that doesn’t go away can chip away at a person’s well-being. But it’s treatable, and can be mitigated with a good therapist and a regimen that includes a realistic approach to the condition and self-care. But sometimes it just gets to you and you find yourself staring into the abyss of despair. It’s not a technical or medical definition, but to me, despair is the evil stepchild of depression – an exponent or two darker and harder to treat.

One of my friends is dealing with this right now.

It’s approximately 12:30 on January 20, 2021. I can tell you right now that I am going to be useless for the rest of the day. Like many people, I have been looking forward to the end of Donald Trump’s term in office like it was the only lifeline to my future.

I feel it already. It’s not hyperbole to say I can breathe now. My lungs literally feel less constricted than they have since election night, about two-and-a-half months ago. I can go to sleep tonight and not worry that I will wake up to some new horror. Maybe I can even leave my phone in my bedroom now when I get up in the middle of the night to pee.

No, the title of this post is not a typo. I think we need to annex the first three weeks of 2021 onto 2020 and start fresh on January 21, 2021. After all, we have been stress drinking for almost five years. Surely we deserve three weeks to recover from the hangover.

Except we’re not going to get a quiet, dark room and a cold compress in the first three weeks of 2021, are we?

If you are a patient, you know stigma. Whether physical or psychological, when people hear you have a medical issue, they often make the leap to ‘defective.’ Even if you have not experienced stigma firsthand, you live in fear of it – that it will keep you from getting a job or that you will have to expose your differentness to gain access to the things you need. It’s a terrible feeling, kind of a sick tightness in the pit of your stomach.

Which was why I was so dismayed to hear (and hear and hear) that we are now attaching stigma to COVID patients.

Really, people? This year hasn’t been hard enough?

I have talked about the importance of an advance directive before. It is the only way to exert control over some of the most important healthcare decisions of your life, even while you are incapacitated. Well, this week I finalized mine.

Considering all of the potentially life-threatening conditions I have, it is slightly criminal that I haven’t had one since I was 20, after an incident in which I was incapacitated by low blood sugar, inadvertently refused treatment at the 24-hour clinic, and my mom told me in no uncertain terms that we were never doing that again.

After procrastinating for so long, I was finally in a situation where I couldn’t delay.

A few weeks ago I had an incident – not terrible, but not something I was prepared for, either. One of my less active conditions is mild asthma. It predates my diabetes, and is activated by strenuous exercise and certain weather conditions. When the air gets heavy, but it hasn’t started raining yet, the dense air tightens my lungs. I take daily medication for it, and I have an inhaler for emergencies, but I haven’t needed it for a good decade.

This week I needed it.