I spent some time reading about the different schools of thought when it comes to long covid (LC) advocacy. Explaining these two ideas is not my main goal here, rather I’m hoping to write about my internal reactions to them, but first I need to give a brief explanation.
One camp says that LC is similar to other post viral illnesses and we can use the work done on those (research and advocacy) to get a head start with LC. The other camp says that LC is unique and should be treated differently from other forms of chronic illness. One reason for the push for uniqueness seems to be the push to find a cure, which the LC is unique advocates seem to think is different from other post viral conditions. Since we haven’t found a cure yet for Chronic Fatigue Syndrome or POTS or a myriad of other post viral chronic conditions then lumping LC in with those would be like giving up hope for a cure.
It was at that point that I realized that those who insist LC is unique are absolutely terrified of… well, of ending up like me. They think my life is awful and they don’t want to entertain the idea that they might also have to live with this chronic illness for the long term. Medicine has largely failed to help those of us with post viral conditions in the past and some LC sufferers are adamant about it’s uniqueness (I believe) in hopes that they will find help where the rest of us did not. As part of the group who has been sick for a lot longer than Covid has been around it’s a pretty bleak outlook to behold.
That was when all the work I’ve done on my mental health kicked in. Within a few seconds of thinking the above I reframed it in my head. My life isn’t awful, but it is really f***ing hard. There’s an important distinction here. If I frame my life as being awful then I’m applying some kind of good/bad scale to it (albeit subconsciously). But acknowledging how hard my life is doesn’t carry that same baggage. Lots of things that are hard are still worthwhile. My life is hard, but it is still worthwhile. Awful has no redeeming qualities.
And I think that’s what doing the work is when it comes to mental health. I had two ways my brain could think about what I was feeling. But I was able to decide which way to think about it. I picked the neural pathway for ‘hard’ instead of the one for ‘awful’. I don’t think I would have been able to do that before I got effective treatment for my depression. It’s not easy to choose to think of things differently than you are “wired” to. But it is possible if given the right support.
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