Illness & Disability During the Pandemic

Wow, has shit gotten real or what?

I haven’t written in a while because while the world has been battling this crazy virus, I have had some other battles to face. About a month and a half ago, I began my search for a new primary care provider that would work alongside my holistic providers. The first recommendation was a Nurse Practitioner who, I was told, seemed to be quite open to the holistic, more open minded approach to care. Upon our meeting she learned that my TSH (thyroid stimulating hormone) was low and had me decrease my thyroid dose. She said it indicated I was taking too much thyroid replacement. She decided she didn’t want to work with me in the end because I didn’t want to see an endocrinologist and she didn’t know what to do with Epstein Barr Virus. (I did find a doctor to work with eventually.)

It wasn’t even a few days after reducing my dose that I felt things had started to shift for the worst. I felt my mental health tanking. Everything I had been working so hard for had gone out the window. I could feel the inflammation creeping back in, the depression got so severe that I couldn’t manage to get out of bed when my husband was trying to leave for work one day and he had to stay home to take care of our kids. The worst part, though, was my impulse control was nonexistent, the uncontrollable rage had returned, and any tolerance of stress I had manage to build up was gone.

I am still not okay. Though I have changed nothing else other than reducing my dose for a single week, I have to find a way to crawl back out of the hole. I haven’t been writing, I have barely been reading. I haven’t been lettering or doing any calligraphy. My house is in a complete state of disarray because I had to choose feeding my children over everything else. I have not a single ounce of energy to do anything. I have been able to shower only every few days because it takes so much out of me, often I need to nap afterward.

While all of this is happening to me again, we are all also self isolating. People are in quarantine. Countries have stay at home orders, the US has states with stay at home orders but others haven’t followed suit. People are panicking and with that panic comes the need to control what we can control. This looks like toilet paper hoarding. This looks like hand sanitizer hoarding. This even looks like people not following stay at home advisories, putting so many other people at risk. They may not even realize that they are acting this way because they are scared.

There are many people in isolation, bored as fuck, complaining about how much weight they are going to gain, tackling so many projects it is hard to keep up, discussing how much they have been drinking. People who are wishing they had more hobbies than going out to eat. My theory is these people who have been busy for so long have no idea how to sit with their thoughts and feelings. It is scary to be isolated with your fears, your worries, your own demons knocking at the door. There is no option to run (unless you are actually running a safe distance away from other people). There are people stuck with abusers, people stuck without food to feed their children, without childcare when they need to continue work in essential fields. There are people battling addictions. There are people needing regular heath care they can no longer receive because the health care system is inundated with coronavirus cases. There are people wishing that isolation provided them the luxury of being bored, is what I’m saying, or the ability to not ration their food because they have lost their jobs, haven’t gotten a paycheck, and unemployment is so backed up they can’t get an answer about their eligibility.

For many of us, though, life has been mostly unchanged. Those with chronic illnesses and many other disabilities have been isolating for a long time. I have a chronic illness. One of my good friends has a brain injury. Some of my favorite people on Instagram have disabilities in which they need mobility devices that make it difficult for them to enter many businesses as they are not accessible. Suddenly, though, we all see how easy it is for people to be able to work from home. Suddenly, people see what isolation feels like, and able-bodied, healthy people are having a very difficult time with it.

I look like an able-bodied person. I look healthy. I have an average build, I am mobile. I function in society with a smile on my face. But I don’t believe that I could work now, even if I wasn’t choosing to stay home with my homeschooled kids. My health is on a roller coaster ride. Could I realistically hold down a job away from home? Absolutely not. I bring my kids to the library once a month (before pandemic). I bring my kids grocery shopping once a week (before pandemic). If I have any other commitments, I become so exhausted that I can not function. If I have a two appointments in a week, I can’t do a single other thing. I see people during this time of social distancing, going for hikes, doing so many activities with their kids, building shit, remodeling rooms in their houses, and it makes me long for a different life. It is triggering, for me, to see these people in temporary isolation doing all of the things that I can’t do any day, any month, any year.

We are living in a moment of history. But for some of us, it feels just like every other day, stuck at home, wishing we could do things that other people do as part of their normal lives. For some, it is fighting addiction. For some, it is avoiding domestic violence. For some, it is hiding from abusive parents. For some, it is being hungry. For some it is relapsing on recovery, mental illness winning during this time of high stress. This moment in history looks different for all of us in many ways, but for some of us, the only thing that has changed is that we are wearing masks to get groceries for our highly restrictive anti-inflammatory diets.

I hope that more companies will realize that people can work from home and be productive so those of us who are sick but not sick enough for disability have more options. I hope there is more emapthy for those who are chronically ill, disabled, or battling mental illness. I hope we come out of this with a greater, more supporting, loving community with less judgement and more understanding. We are all tied together now. We can continue to make changes toward living that is more inclusive to this rapidly changing world. For everyone. More sustainable lives for everyone.

Published by Tristan Manzolini

Hey! I'm Tristan, lover of beautiful things, mother to three, chronic illness warrior, and the person behind this blog. I have been on a journey toward wellness for a bit now while homeschooling the kids and cooking (and eating) a lot of food. I wear my heart on my sleeve. I have come to the realization that I don't do well with middles. I like to ramble and talk about one thing that leads to something entirely different and I love run on sentences. Oh, and I really love things that I can't have at the moment (coffee, ice cream, chocolate, butter, fresh baked bread, I miss you and I'm sorry I didn't appreciate you as much as I should have love you bye).

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