Today is ME/CFS Awareness Day. If you’re healthy, please take some time out of your busy day to read this and learn a little bit about chronic, post-viral illness. This next paragraph is for you. If you have ME/CFS or another post-viral chronic illness, you already know this story too well. Your story probably sounds a lot like mine. You can probably skim many parts of this as you’ve lived it. If you’re new to the community, I’m sorry to welcome you here, but my story will show you how great it is that you’re here. This post is for us – the #MillionsMissing who have been fighting this illness and the systemic failures that caused it. This post is for me – a safe place to release of all these hard feelings and contradictions – the hopefulness of new progress and the hopelessness that it’s taken a pandemic and #MillionsMore to finally be getting some attention – with people who understand and support me without an explanation. It’s for ME – a severely neglected and stigmatized illness that deserves funding, research, and support that is decades overdue.
ME/CFS is a neuroimmune condition that is often (though not always) triggered by infection and affects every bodily system. Most doctors do not know what ME/CFS is due to a long history of stigmatization and neglect. This syndrome often gets reduced to one symptom, fatigue, but it is much more than that. Fatigue doesn’t even begin to describe it. Now, we have a better definition for the hallmark symptom of this illness, post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE). This is a delayed worsening of symptoms following minimal activity. Fatigue is a normal response to overworking. PEM/PENE is not. For example: I developed a low grade fever and had to sleep the rest of the day after a 15-minute phone call with my Mother on Sunday. We have no approved treatments and the only option we have for managing symptoms is pacing. I have to be incredibly careful of what activities I do on a given day. I need at least a day of rest before an activity and at least two days rest afterwards – it’s incredibly disabling. Despite 2.5 million Americans with ME/CFS – and an estimated 3 million more with Long Covid that meet diagnostic criteria for ME/CFS, most medical professionals are unaware of this devastating illness and the true meaning of it. Most think it’s just “unexplained fatigue.” However, the diagnostic criteria requires that a patient have a substantial reduction in activity lasting more than 6 months, PEM, and unrefreshing sleep, with these symptoms lasting more than half the time. The criteria also requires one of the two: cognitive impairment or orthostatic intolerance.
Despite having symptoms for a decade, I was not diagnosed with ME/CFS until 2019. Prior to that, I was diagnosed with fibromyalgia, which has many overlapping symptoms but is diagnosed based on pain at certain trigger points. I followed some fibro bloggers but didn’t really think that what they were saying matched my experience. When I was diagnosed with ME/CFS, my doctor told me that this was “a waste bin diagnosis” to capture my symptoms but that I had some mysterious illness that hasn’t been figured out yet. This is false, but I didn’t know that. I was given a one-page flyer and that was it. I also ignored my doctor’s advice to cut back on work hours or find another job. I regret that now. I still blame myself for continuing to push through debilitating symptoms to the point that I’m now disabled, but what other option did I have? Our society constantly pushes the false narrative that I could work through it, I could have a positive attitude and ignore my discomfort and it would go away. That is so wrong and so harmful, but it wasn’t my fault.
A few months after my diagnosis, when I wasn’t improving after a steroid pack and other treatment attempts, I came across a tweet about #MillionsMissing from one of the fibro bloggers I followed who also has ME/CFS. Finally I realized that I didn’t have a mystery illness – I have a neglected, stigmatized and ignored illness. I wasn’t alone. I fell down a rabbit hole of #MillionsMissing posts and found explanations for my symptoms – the payback after minimal activity, the brain fog and cognitive issues, the pain, racing heartbeat, dizziness, and more.
After a decade of doctors telling me nothing was wrong and me desperately wanting to believe them instead of my own experience, I was finally validated. This syndrome explained nearly all of my symptoms. I was motivated to learn everything I could. I have shelves full of medical books now. A bookmarks folder full of medical journal articles. I didn’t have the language to explain my symptoms so I learned medical terms, made diagrams of my symptoms, and meticulously tracked my activity, meals, and sleep to find my triggers. I have binders full of my medical records that I have poured through, looking for evidence from 2009 until now of the onset and the triggers that worsened my condition. I thought I could think my way out of illness, but it doesn’t work like that.
The #MillionsMissing taught me that my illness isn’t a personal failure that I brought on myself. Unfortunately, I also learned that this illness is a tragedy resulting from the systemic failure of our healthcare system, medical research, and culture that marks resting as laziness and failure. However, I am hopeful that we can inspire change in these areas. I didn’t realize the toll that seeing these failures repeated and further exposed by the Covid pandemic and growing numbers of Long Haulers would have on me. My symptoms are edging closer and closer to severe ME and I am realizing that I am not alone and I don’t have to feel like the weight of advocacy and awareness is on my shoulders. It is devastating to see so many more stories similar to the beginning of mine, but I have hope that theirs will end with a happier ending and that maybe mine will too. The #MillionsMissing deserve a happy ending.
We now have #MillionsMore joining our ranks after an acute covid infection became ME/CFS. We have more than doubled in number. We warned of this last year, and I felt ignored and misunderstood as a result. But I guess that’s understandable – healthy people don’t want to believe that you can get sick and never get better.
Now I realize that #MEAwareness Day is not for them. Though we desperately need healthy allies, it’s not my job to convince healthy people to understand and care about my illness (and in turn to understand and care about me). It’s for the people that are in the place I was in two years ago. Alone and unsupported, given a diagnosis without an explanation of what it means, left on their own with no treatment plan, pushing through and declining and not knowing why. #YouAreNotAlone
Instead of feeling discouraged that my healthy friends never interact with posts like this, I feel hopeful that by sharing my story, someone else will have the experience I had in 2019. Someone else will find community, knowledge, support, and maybe even advocacy like I did! I wish I remembered who shared that #MillionsMissing tweet in 2019 that changed my life. The tweet that made me realize there was a biological explanation for what I was going through and that this illness was not my personal failure. The tweet that inspired me to watch the film Unrest and made me realize that the lazy diagnosis of conversion disorder was just that – a lazy explanation that isn’t even based on science and most importantly, a misdiagnosis. The tweet that led me to the film that inspired me to connect with #MEAction and join patient-led advocacy. The tweet that led me to the film that led me to the organization that provided me with friends that provide the support and guidance I so desperately needed, but that can only be given by someone who is going through it. This is what #MEAwarenessDay is for – it’s for us, the ones affected, the ones that deserve support and care and treatment. So even though right now it feels like we’re doing it all on our own – managing our illness and fighting the systems that made us this way from our beds, while we should be focused only on healing our own bodies – we’re doing it so that those that come next don’t have to do it all on their own for quite as long as we did. So that those with Long Covid are diagnosed quickly before their symptoms progress in severity. I may always be resentful and angry that I was undiagnosed and disbelieved while I had mild ME and it took progressing to moderate ME and becoming mostly housebound and often bedbound to be diagnosed and believed. But it doesn’t have to continue this way.
Days like today are for us – so that we can feel safe and supported sharing our stories. I was so fearful to tell people what I was going through because there is so much misinformation about ME/CFS (look up GET and PACE trials) and I didn’t think anyone would believe me and oftentimes, people don’t. I “came out” as a person with ME during the #NotEnough4ME campaign in November 2019. I was able to share other videos of stories like mine to validate my story. That’s the best part of this community. We now have a safe space to share our experiences and be validated and vindicated.
Awareness doesn’t feel like enough to make a change with this illness and it is discouraging that after decades and decades of advocacy, we’re still having to fight for awareness, but if it reaches just one person with ME and they can finally have an explanation and support, it’s worth it. I often feel like I’m just posting my diaries for nobody to read, but just for the purpose of me getting these thoughts out from my spinning mind. How many people will even reach the end of this? Let me know if you did. I will applaud you. As much as I desperately want my friends, family, acquaintances to read this and believe me – this isn’t for them. It’s for me and it’s for everyone with ME to know that we’re not alone, we don’t have to keep fighting this beast alone, and we shouldn’t be doing this all on our own.
My biggest challenge is the feeling that I’m not doing enough. I’m not doing enough to educate others about this illness. I’m not doing enough to advocate for funding. I’m not doing enough to make myself well. These are lies. Just by existing with this illness, we are doing enough. I haven’t been able to participate in planning or events for awareness day due to my symptoms and that is hard. But I’m doing enough. I’m battling this illness every single day. Even on the days when I am stuck in bed, unable to tolerate any light or sound, I am doing enough because I am living with ME/CFS. My friends with ME/CFS – whatever you do today, it is enough. You don’t have to participate in events or share your story – just by being a part of this community, we are enough and I am hopeful that the sheer numbers of us will finally grant us the power and influence we have deserved all along.