I need to name something that others, and I have been seeing a lot of online recently, that I feel does more harm than good to the ME/CFS, MCAS, POTS, Complex Chronic Disease Community that it claims to serve.
Lately I’ve been seeing a lot of content creators sharing how they’ve miraculously recovered (sometimes “overnight”) from these illnesses.
Many of them reference that they were previously “severe level ME” but then will go on to share how for a couple of months they were mostly homebound and could only leave the house for short walks or to go to the café.
Let me be clear: I’m happy for these people and their recovery. I’m glad that their version of “severe ME” included the ability to go for some short walks or go to a café. I’m glad that they received the care or information that they needed, in early stages, and were able to recover within a few months or only experience that level of illness for a month or 2, or even 6.
The issue that I’m having with this narrative is that it lacks nuance and awareness of the lived experience of the majority of “severe ME” cases.
For many people living with severe ME, their experience looks more or less like this:
- Completely bedbound, often for several months or years
- Require a caregiver
- At times unable to eat or speak (sometimes for prolonged periods requiring significant medical intervention)
- Having to lay, eyes closed in the dark for a large portion of their existence
- Can only use specific fabrics and clothing/blankets due to severe burning skin pain on contact
- Unable to respond to text messages, take phone calls, scroll social media, take photos of themselves, document their experiences in apps or symptom trackers etc.
- Unable to access medical care unless its within their home environment, and very limited in how long/how often they can even manage that
- Once they’re able to manage an occasional outing they often require a wheelchair to do so
- Unable to perform basic daily living tasks like bathing, making their own tea, toast or a meal, do laundry, groceries (even online for delivery)
Some people with ME will have access to resources, supports, tools and education early enough in their illness that they never reach this severity. Others reach this severity and must live in that state for years, while some patients will reach this level of severity for a few months or go in and out of it depending on many other factors.
Some people with ME had an acute infection and the illness came on fast and strong, while others have a very long and slow progression of these illnesses – sometimes declining for several years before reaching a diagnosis that will help them educate themselves and put the necessary recovery supports in place. Many patients will have overlapping conditions that impact their recovery such as MCAS, POTS, hEDS, etc.
In addition to this, peoples’ perspectives of recovery or remission differ.
Some patients reach a place where they’re still unable to do all the things they naturally could before they got sick, but are able to do more than they could during a more moderate to severe period, and consider that recovery.
Others don’t consider themselves in remission or recovered until they’re able to do everything they could do prior to illness, without post-exertional malaise (PEM).
Some will reach a place where they have a higher level of function, and consider that recovered or remission, even if it’s only for a couple of months, while others don’t consider it remission until they’ve reached a year or more.
My health started to decline in 2014, and in 2019 when I reached “possible remission” from ME and overlapping conditions (Lyme disease and co-infections, MCAS, POTS, multiple pain conditions, etc.,) my doctor at the time told me we wouldn’t consider it remission until I reached a year. I reached just shy of a year before beginning to decline again during my pregnancy with overlapping, compounding traumatic factors. My post-partum experience included several overlapping factors that also pushed my body way beyond its window of tolerance until I reached a complete severe-ME crash in 2023 where I was for a period, fully bedridden, unable to eat or speak, requiring a caregiver at home with me for basic needs. I often find it difficult to share my story because it’s tricky to effectively portray the various nuance, timelines and mild-moderate-severe levels of these conditions that I’ve experienced and have seen in other patients, as well as how they fluctuate. I regularly worry that I may not be giving a clear and “true” picture of the experience because there is no good way for me to share every detail in digestible ways.
To my knowledge, there isn’t much data on whether the people who get sick quickly also recover quickly, vs the people who have a slow decline, but it does seem to be a pattern we see within patient communities. My internal medicine doctor has also shared with me that there is a correlation between people who receive access to effective medical care early in their illness recovering easier or preventing the illness from becoming severe, vs the people who have to wait years for a diagnosis or any path forward.
My sharing this isn’t to discredit anyone else’s lived experience. It is to name something that the ME/CFS and Complex Chronic Disease community that I’m connected with, is seeing more and more of online that often ignores, discredits or bypasses the lived experience of those who have truly severe ME or have been ill for a very long time; often going years without resources, access to support, or even a name for their decline (because a name can give people a place to start). My hope is that seeing more of these stories means that people are being offered education and resources quicker once they’ve become ill. It is possible that these individuals received a diagnosis and/or access to care in a faster timeframe than those of us who have been living with these illnesses for several years or decades. Many of the stories I’m speaking to seem as though their onset-worst of their illness-recovery is a shorter timeframe than my onset to diagnosis alone. It is also possible that these individuals never reached the severity that some do, or that their root cause was different than some of ours, or, that they consider “recovered” a different state than someone like me does. There are an unknown number of factors at play, and with the lack of ability for nuance and details through social media and other limited-character count avenues, we may never know.
