Vaccine ableism

March 19, 2021

For weeks, whenever someone asked me when I would be eligible for the Covid-19 vaccine, I told them I would be eligible at the start of Phase 2. They nodded. It made sense. It made sense to me, too. After all, I have a bunch of risk factors. Phase 1 was for medical personnel, and Phase 2 would be for folks with risk factors due to age and/or health conditions, as well as essential workers who weren’t covered in Phase 1 (grocery store worker, utility workers, delivery workers, etc.). Phase 3 was for everyone else. The first part of Phase 2 was for folks who were 65+ or had 2 or more co-morbidities, which I knew I had. But somehow, oddly, I was wrong.

I started to suspect something when I saw the list of conditions that Massachusetts was counting as co-morbidities. At the time, the state’s website simply offered a link to the CDC’s website. The CDC (the Centers for Disease Control and Prevention) offered two lists. The first list was for more serious conditions. I didn’t have anything on that list. The second list was where I fell. I have 5 different conditions/medications that fit into that list. But for some reason, Massachusetts wasn’t using the second list, only the first one.

Then Massachusetts did something mysterious: they added smoking and obesity to the list of eligible conditions. So now people I knew were qualifying because they smoked and were obese but were otherwise totally health. Meanwhile, I wasn’t eligible yet despite having multiple autoimmune conditions and taking an immunosuppressant medication, in addition to other things that were also suspected to be co-morbidities, like central complex sleep apnea. In fact, I wasn’t going to be eligible early at all. Nope, I was getting lumped in with the general population in Phase 3. WTF???

Over and over friends would ask, when are you eligible? Over and over I responded, “I’m not eligible until the general population.” I lost track of the number of times someone said, “I can’t believe I’m eligible before you!” or asked “Why the hell aren’t you eligible before me?” (Spoiler alert: the answer is ableism.) I watched friends with similar health conditions getting vaccinated in other states. I watched friends get vaccinated because they were technically eligible, even though it wasn’t intended for them. For example, one was eligible because she works for a hospital, even though she works in administration, having no contact with patients, and has been working at home all year.

Meanwhile, at my last medical appointment my doctor said, “You need to get the vaccine as soon as possible.” That was immediately followed with, “You aren’t eligible until Phase 3.” I tried to convince myself that waiting wouldn’t matter. After all, I’m staying at home, right? But what happens when I can’t stay home? What really changed my mind was the breast cancer scare I had several weeks ago. I absolutely had to be seen in person. What happens the next time I have to see a doctor in person? Because sooner or later, it will happen again. The vaccine won’t protect me 100%, but it’s a good start.

And to me, that’s the point. Yes, everyone wants the vaccine. But while some folks want to get it so they can eat at a restaurant or hang out with friends (both very important, and I’m definitely not negating the importance of either one), those are optional. There are ways to see people outdoors and at a distance with masks on. Meanwhile, some folks must get medical care, in person, up close, and indoors. Yes, medical offices take precautions. Still, these are not optional visits, and we should be as protected as possible.

Are there folks who need a lot more medical care than me? Yes. Are there folks who are at much higher risk of Covid complications? You bet. I’m not suggesting that people like me should have been first in line. Not for a second. I am saying unequivocally, without the slightest hesitation, that we should not be last in line. It is inexcusable.

This is nothing short of ableism. I have had many doctors tell me that I am at higher risk. My rheumatologist keeps reminding me to stay isolated. I have been following the science. I see folks who have higher risk factors than me who are likewise not eligible until the general population. And yet, Massachusetts did not take us into account. Who determined the order of the vaccine eligibility? Were there doctors and scientists involved? How on Earth did this happen? Why allow folks on that first CDC list but not the second? Why allow people who are obese and have type 2 diabetes to get vaccinated at the start of Phase 2 but not allow someone with type 1 diabetes and severe asthma until the end of Phase 2, and not allow someone who is 54 years old with type 1 diabetes and liver disease until the general population? This makes no sense.

This reminds me of one year ago, in the spring of 2020, when we were first learning about the risk factors of having severe complications from this horrible virus. Over and over people said that most folks shouldn’t worry too much because it mostly just effected the sick and elderly. They were saying, “I’m not worried because I’ll probably be fine, it’ll just kill others.” They were saying that they didn’t care about our lives. That our lives didn’t matter as much. That our lives had less value. Well, fuck that. Our lives have plenty of value and suggesting that it’s okay for those who are sick and/or elderly to become incredibly ill and possibly die is horrifying and inexcusable.

And now, one year later, so many who are sick and older are told to wait because their/our co-morbidities don’t count. What bullshit!

This week, Massachusetts announced that in one month everyone will be eligible for the vaccine. So many disabled people, already at a disadvantage because of difficulty accessing the system, will be forced to compete with healthy, less-at-risk folks for those coveted timeslots. If the past is any indication of the future, a lot of disabled folks will end up at the end of the line, behind healthy folks. This is not ok.

There is nothing I can do about this. I called the governor’s office and reached out on social media. I have spoken up about it in the few ways that I could. I know that this post won’t change anything. But hey, this site is called Chronic Rants, after all, so I am ranting. I am ranting because once again, the government is being ableist and getting away with it and it makes me want to scream.

Maybe we shouldn’t be first, but we absolutely should not be last.

2 Comments | Frustration, Healthcare, Politics, Rants | Permalink
Posted by chronicrants

Waves of relief

March 3, 2021

Waiting for the biopsy results was the longest two weeks I’d ever experienced. Why did the pathology lab have to be backed up now, of all times? I was terrified. If it was breast cancer, I wasn’t sure if I could handle it. This might just be the thing that broke me. The thing that was one thing too many. Who even knew that breast cancer could present as a skin irritation? I thought I was seeing the dermatologist for something weird, but benign, and now I was suddenly waiting for biopsy results. Would would I do if it was cancer?

That was more than a dozen years ago. The results came back negative, and I was relieved, and went on with my life. Until two weeks ago. Two weeks ago, I happened to see something weird in my peripheral vision as I passed the bathroom mirror. I looked closer. I had something weird on the side of my breast. It looked like maybe a pimple that had gotten irritated and popped, then scabbed over. Weird. I know pimples on breasts are possible, but I don’t usually get them there. I moved on.

The next day I took another look. The scab looked green-ish and the red area around it had grown larger and darker. Uh oh. I thought of that other time, more than a dozen years ago. It was after hours, but the next morning I called my nurse practitioner’s office and set up a telehealth appointment. My NP is a women’s health specialist, and really knows what she’s doing. I waited anxiously for the next day’s appointment. Then it occurred to me to send in photos. As soon as she saw the photos, the NP told me to come in, and mentioned that we might need to schedule a mammogram. Now it was Saturday, and they were about to finish seeing patients for the day. They didn’t see patients on Sundays and the scheduler wouldn’t be in until Monday. I waited. And waited.

Finally it was Monday, and I reached out first thing to get an appointment. The soonest was Wednesday, but I asked the scheduler to call me if there were any cancellations. I was a nervous wreck. For the first two days I had told myself that I was overreacting by even considering the possibility that this was anything other than benign, but when my NP mentioned a potential mammogram, I knew it wasn’t all in my head. Like I had all those years ago, I wondered if I could handle cancer. I wondered if it would be the thing that broke me. But this time, I was pretty sure it wouldn’t be. I would deal with it, somehow.

I was fairly sure that even if this wasn’t cancerous, it was probably infected. The center scab had come off, then scabbed again, then come off again, even though I was careful not to touch it. Each time the scab came off, it oozed. The center was yellow/green and the surrounding area was red. This was not good, whatever it was. But I had to wait.

The timing was odd. I had my first period in at least a year. I was taking antibiotics for SIBO, a gut issue. Those antibiotics target the gut, though, and wouldn’t help this. I hadn’t been indoors anyplace in 5 months. But if ever there was a time to go indoors despite the pandemic, this was it. This all ran through my head for days. Then on Tuesday, as I sat at my kitchen table sewing masks, the phone rang. There was a cancellation at 1pm. I looked at the clock: 12:21pm. I live 35 minutes away. I took it without hesitation. I shut off the sewing machine, threw my things in a bag, and ran out the door. I ate my lunch in the car with my hands, thankful that I had leftovers available. A cold hamburger patty, cold roasted potatoes, and cold salad never tasted so good.

Even while highly on edge about the thing on my breast, I noticed and was grateful for the office’s excellent Covid protocols. The assistant took my vitals. Then I sat in the room while my NP called me on my cell phone (which I’d been instructed to bring for this purpose) and asked me to explain the situation. This minimized our time together in the room. She came in and washed her hands carefully while clearly trying to distract me with neutral conversation. Then she came over to examine me. It was my first physical contact with a human in months, but I didn’t even notice that part. The only thing I processed was her response: she was relieved. It wasn’t cancer.

I left that office with a prescription for antibiotic ointment and with the confidence that that open sore was not indicative of breast cancer. Then I celebrated. The day before I’d baked cookies, which I ate as comfort food because I was stressed out. Now I ate them to celebrate. I blew off all responsibilities and spent the afternoon playing computer games, taking walks, and relaxing. I happened to see a neighbor’s adorable puppy on one walk, and had a lot of fun playing with him. What a joy!

The next day, I woke up and remembered it all immediately. Again, I felt relieved. Again, I had a relaxing day with few responsibilities. It was just what I needed after such a harrowing week.

Of course, responsibilities can’t be held at bay forever, and I am back to doing the things that must be done. Still, I am hugely relieved. As I put the antibiotic ointment on my breast three times a day and notice that the scab has not reopened and the redness has continued to shrink and fade, I feel the relief all over again. This could have been so much worse. So many times, my body has defied the odds and given me some new terrible condition, but not this time. So this time, I’m celebrating.

2 Comments | Expectations, Healthcare, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants