We all tell stories about ourselves. We think of ourselves as athletes or academics or family members. But illness, just like trauma, throws a wrench in our ideas of ourselves. I(t breaks the narrative that we tell about ourselves. Before I got really sick, I was an athlete, a perfectionist, someone who worked on her schoolwork until she was falling asleep at her desk at 2 AM. But as I started to deal with more and more symptoms, I couldn't (and can't) do as much, and that is honestly difficult to admit.
After this pandemic, thousands more people will be left with long-term chronic illnesses than before. Here. I am including Long Covid (the lingering of neurological, respiratory, and painful symptoms months after the acute infection has concluded) as well as the inevitable mental health issues that will arise as a result of the isolation that so many of us have dealt with over the course of the last year. Since I am the person who most of my friends (and acquaintances) summon when they have been diagnosed with a chronic illness or condition, I thought I would share some of my "post-diagnosis" advice. I almost wrote this as the first in a series about "Post Traumatic Literature," but we are not through the trauma yet, so that would not have have been an appropriate title.
Illness doesn't care who you are. Viruses could care less if you eat the healthiest. Viruses don't care about man-made barriers. Illness is indiscriminately and being sick, even long term is not something that you should view as a moral fault of your own. You are not weak or less competent because you need help with more things than you used to or because you had to build new systems in order to cope. Trying to "out work" a biological issue is not possible in some circumstances and not sustainable in all circumstances. Many of the people who have written articles on their experiences with Long Covid were medical professionals or wellness professionals who denied that the virus could ever do any real long-term harm to them.
Be aware that doctors and the general public may doubt your experience. Every chronically ill person will tell you that they have had people, doctors, even, tell them that they do not have a condition that they have been diagnosed with. We have been told that we can't be in as much pain as we say we are and that we are exaggerating for drugs or attention. You will often be blamed for your own symptoms: "you don't take good enough care of yourself," "You can't afford the best treatment." Pain and fatigue, the two symptoms that seem to be reported the most in Long-Covid are also the hardest to express in words which almost certainly does not help with communication. The general public tends to pity us because we make them uncomfortable. Any of them could catch COVID and have long term effects from it, and therefore, it is absolutely terrifying for them to look us straight in the high. Know that this isn't about you. This is about their insecurities and fear, and their feelings are not your responsibility.
Chronic Illness is unpredictable. One day, you may be able to do your normal workout, go to work, take care of your family, etc. But another day, you may not be able to get out of bed at all. There may even be weeks that you can't get out of bed at all, and unfortunately, you can't schedule those flares. There are, of course, things that you can do to take care of your body, but when you are dealing with an illness, especially one like COVID that has only been researched for just over a year, there is still so much that isn't known. Everything may feel; like it is changing right now. Some people are starting to live like the pandemic is completely over. But you may be feeling the lasting effects, even if not everyone is. You may be rebuilding your identity and your life. Take your time. Allow yourself to grieve and feel this disruption in your narrative. You can do it. It might not feel okay today, or tomorrow, next week or next month, but someday, you will look back and not be able to remember the story you had about yourself pre-illness.
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