Healthy Vs. Unhealthy Illness Comparison
The Basics
-Every chronically ill person has a right to complain about their health, grieve for their health, and express their emotions
-No one on the internet has the right to question the validity of someone's disability based on something they can or cannot do
-Severely ill people are underrepresented on chronic illness platforms and we should try to raise awareness for them
-Objective data exists around the average severity of illnesses and should be known to doctors (especially in cases such as severe ME where there is an extreme misunderstanding around illness severity)
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So when is it appropriate to raise awareness for severe patients and how can we avoid attacking people who are also struggling?
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Unhealthy Comments (Avoid)
-Calling out privilege* when people make posts venting about the difficulty of living with chronic illness (it doesn't matter if they can still work, read, do crafts whatever it is you can't they are still suffering and have a right to support)
-Comparing your symptoms directly to someone else
-Questioning someone's diagnosis due to what they post on social media
-Comparing who personally has it worse based on diagnosis or what is shown on social media
*My only exception to this rule would be if someone is making a post where they use their personal case to raise awareness for all cases of an illness without acknowledging their privilege. This is almost never the case.
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Healthy Comments (Okay)
-Corrections on educational posts (ie. a comment explaining very severe ME on a post that only mention mild, moderate, and severe patients)
-Comments on posts that end in questions about your experience (ie. "What do other people here do about showering?")
-Notes on personal posts* if the person is doing something that may permanently damage their body (ie. Cautioning mild ME cases complaining of rapid deterioration from pushing themselves into PEM repeatedly)
*Please be kind and non-judgemental. Try to relate to their situation before explaining why pacing is important.
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You might notice there isn't a ton there. That's because I often find it more helpful to raise awareness for severe cases in your own work. Leading by example rather than calling out others. Additionally, if you have an account you really admire and are on messaging terms with, a better approach than publically calling out might also be contacting them privately along the lines of "I love your content on MECFS* so much. As a severe patient though I sometimes don't feel represented. Please let me know if I can help you better understand severe MECFS* better so people can fully understand how terrible this illness we live with really can get."**
*MECFS could be something else here
**I mention this option as many people with severe ME are too ill to produce the sort of educational content that gets views on these platforms
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Better Ways to Raise Awareness for Severe Patients
-Acknowledging your own privilege in your own posts when you can
-Awareness posts that focus on severe cases of the illness rather than always focusing on yourself as the primary example
-Using terms like mild and moderate for MECFS cases if that accurately describes you, and putting those terms in context to reveal the severity of your illness.
-Statistical comparisons that reveal just how low quality of life in MECFS is. This can include comparing to other diseases, just not other people.
-Not sugar coating your Instagram and showing as much of your real day-to-day life as possible. For moderate ME showing severe crashes and explaining the risk of being trapped in one permanently.
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Grey Zones (Try to avoid but more understandable)
-Venting about your symptoms and struggles on another post also venting about struggles. If coming from a completely first-person perspective this can be non-comparative but it does have the potential to be triggering and invalidating to the og poster especially if you are much more severe than og.
-Correcting about severe or very severe ME definitions on (what you see as) moderate patients self-identifying as severe. The definition of severe is flexible and I don't think we help anyone by trying to gatekeep. Try to keep your comment to raising awareness of very severe ME rather than gatekeeping what counts as severe.
-Leaving "I miss..." comments on positive posts like vacations, first time out again, etc. The emotions behind these comments are valid and deserve to be expressed but you can be accidentally invalidating someone's illness. Try to at least also throw in support of their illness and recovery, not just your own sadness.
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The Bottom Line
We all want to compare ourselves to others and social media is set up to do just that. Certainly, I have spent far more time than healthy wondering
"How can they do that with MECFS? Am I not trying hard enough?"
And
"Wow, I have no idea how they can deal with all that. I'm so spoiled."
But neither of those thoughts helps me, helps other people here, or helps raise awareness for the terrible neuroimmunological disease that is MECFS. So even if we can't help what we think, let's think before we "help" and try to make our comments productful and non-hurtful to keep the spoonie community a mentally healthy place for all.
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Disclaimer: I try my best to follow these guidelines. I'm sure I don't do it all the time. Sometimes I'm tired and brain fogged and just get snippy. If I do it on your post don't be afraid to call me out and I am so sorry if I hurt anyone or make their illness feel less valid. Part of life as a spoonie is understanding that we are all stretched emotionally thin often beyond our breaking point. Understanding that people who leave these sorts of comments are just processing their own resentment and bitterness towards our severity of the illness can hopefully help remind you that we never mean to attack you. After all, I was mild once before and I remember how terrible it was to be judged for using disabled seats on buses as a young-looking 19yr old. A little bit of compassion goes a long way. All we can each do is our best.
Please stop comparing your illness to others on social media.
It can be really frustrating sometimes as a patient with severe ME to see patients with mild ME complain about their struggle to do things I could never do anymore. But comparing myself to them or pointing out "it could be worse" is not helpful to anyone. MECFS is never mild. Even so-called mild cases have a 50% reduction in pre-illness capabilities. That is huge. That is a severe illness that deserved recognition and compassion.
That said when the millions missing and millions more with ME do not include representation of severe and very severe ME we run the risk of people not understanding how serious and even deadly this condition can be. So how do we show the severity of ME in a healthy way?
The answer in my opinion is a clear separation between personal and educational comparisons. If something is a personal post about someone's struggle this is not the place to educate about severe ME. If something is an educational post about ME patients in general then it is okay to use it as a place to raise awareness. But the best choice is making dedicated content about severe ME and acknowledging privilege in your own content rather than policing others.
In general, try to remember that while ME has drastic variation in severity patients at every level face severe discrimination and invalidation of their illness from society and medical institutions. Therefore, it is in our best interests to fight this ableism by lifting each other up not tearing each other down. After all, a mild patient could easily catch a cold and become severe and a severe patient could spontaneously remit. These categories fluctuate and it is in everyone's best interest to have a community supportive of us all. If you are mild, use your additional energy to raise the voices of those less able to make themselves heard. If you are severe, validate the illness of those who are still mild and remind them that their pacing and taking care of their health is in fact an essential need to not becoming severe themselves.
