As First Wave Long-Haulers Mark Their 2 Year Anniversary, Why is Long Covid Still Being Discussed as a Weeks or Months Long Illness?

Today marks my two-year Covid-versary, as many of us Long-Haulers call it and I am not any better. I suppose it is better than calling it the “day I lost me”, but it doesn’t quite paint the reality of what these two years have been like. Read that again; two years.

I feel like I’m going through the motions, but I’m not really here. I’m not really living. I find myself really sad and frustrated that two years into this global pandemic, with millions of lives lost and millions now impacted by Long Covid, we completely lack Long Covid education and public messaging. It angers me that two years in, knowing we have millions of people disabled from COVID-19 and Long Covid, we are still focusing on studies citing patients sick 3–6 months post-infection, and that official definitions for Long Covid cite similar numbers, misrepresenting the chronicity and severity of Long Covid. I find myself screaming at the top of my lungs, but it’s like everyone around me is wearing headphones or has me on mute as they continue on with life. It’s very reminiscent of those dreams where you are trying to move or go fast, but you can’t.

While Long Covid research is underway and some consequences of COVID-19 infection have become evident and yet are still not well known, like the high percentages of patients developing conditions like Dysautonomia, ME/CFS, Mast Cell Activation, Autoimmune Diseases and more, people are suffering terribly. There is still so much we do not know, however, we do know that millions of people who got sick two years ago are still sick and see no end in sight, and they are developing conditions like those mentioned above that are typically life-long, debilitating and disabling conditions. However, public officials, health agencies, medical providers, and researchers are making the mistake of talking about the long-term effects of COVID-19 and Long Covid in terms of weeks and months. It is incredibly misleading for the public and those expected to guide them, and it is extremely dismissive and frustrating to those suffering from Long Covid pleading to be heard, seen and helped. We recognize that if those who are responsible for creating or expanding the forms of assistance we need…