Why I dislike #HealingIsPossible?
I see this tag all the time under MECFS posts and I have a serious distaste for it. Why? Not because it's false, spontaneous remission from MECFS is possible, but because it implies that healing should be your reason for living.
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Context
So often these posts revolve around people who are doing everything (and I mean EVERYTHING) to try to heal. They are trying crazy unproven therapies, following every diet known to man, meditating daily, tracking all their food, activity, symptom, hr, hrv, etc. They are often also processing trauma and dealing with a chaotic emotional life on top of all this. So what? You ask. Isn't it good they are trying to heal?
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The problem
While healing is important, there are very few treatments that have even minimal scientific evidence for treating MECFS. When people post these #HealingIsPossible posts they imply that doing all of these crazy routines and treatments is the way to heal from ME and if you are not doing these treatments you are not dedicated to healing. The unspoken addition is that your illness is therefore your fault because you could address it by following their "healing" advice.
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The toxin
The toxic part of these posts is not that they offer suggestions and possible explanations for health issues. A post on celiac for example #HealingIsPossible may actually help some people to get tested for celiac. The issue is that the way this hashtag is presented implies these posts can solve everyone's problems. In reality, 95% or more of MECFS patients will not recover. #HealingIsPossible but #HealingIsImprobable.
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The Harm
While these posts might be annoying for me and occasionally suck me into buying some supplement or trying some weird therapy I am not the real victim of these posts. The real victims are those who cannot afford these therapies. They are either tricked into buying things they cannot afford or made to feel guilty for not "investing in their health."
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Myth feeding
In addition to financial harm, #HealingIsPossible also perpetuates the myth that MECFS is a curable disease. That those who have suffered for decades just haven't tried the right treatment yet. This is incredibly harmful to public perception and funding scientifically proven cures and treatments. Often when people #HealingIsPossible, they mean to say that they have received some benefit from treatment. They are still chronically ill but this supplement or therapy helped them feel a bit better. But that is not how it is interpreted by the general public when the term on the label is "healing."
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Limiting Chronically Ill Patients
The other myth this perpetuates is that chronically ill people should not accept their illness and need to put 100% of their energy into getting better. While this is a fine mindset for someone with an acute injury or illness when it is applied in the context of chronic illness it becomes toxic. Chronically ill people are people and while our life-changing illnesses are an essential part of that, we still have other motivations in life besides getting better. If you have a chronic illness and you are constantly told your only purpose when sick is to get better than what do you do when you have tried every treatment? Taken to its endgame this mindset leads to either endless trials of more and more unproven therapies or deep depression. Neither of which is helpful or healthy.
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Why does it persist?
Because #HealingIsPossible seems like a positive thing. It seems like a good way to encourage people to have hope about their illness. Maybe in an ideal world, that's all it would be. But unfortunately, that is not my experience of it here on Instagram. Instead, it has been used to perpetuate the harmful myth that chronically ill patients must constantly revolve their lives around their illness. That healing is a responsibility the chronically ill have neglected.
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Summary
So yes #HealingIsPossible but also healing is unpredictable, healing is often not under your control, healing is random, and healing is not for sale. You cannot buy your way out of an MECFS diagnosis. Yes, you should keep an open mind and be ready to take advantage of remission if you feel your body starts to recover. However, don't feel like you have to wait on healing to live your life. Don't feel like you have to dedicate all of your money and time to an improbable result just because of #HealingIsPossible.
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#HealingIsPossible but healing is not everything.
I see this hashtag a lot and it always rubbed me the wrong way, here's why:
The actual message "healing is possible" is fine. Remissions are a legitimate thing and 85% of ME patients will experience either a recovery (5%) or remission (80%) at some point.
The problem is the subtext. When you say "healing is possible" to ME patients alongside a bunch of treatments, supplements, diets, exercise programs, meditation, trauma therapy, etc. You imply that these things will heal MECFS. When in reality 95% of people will not ever recover from ME. They may have ups and downs, but they will not be healed. Yes, many people do not mean that they have been fully healed by these treatments, but that is how it is often interpreted. In addition to not working for everyone, these treatments are also inaccessible to many, especially expensive diets and supplement routines. Sometimes this is defended as being still "cheaper than being ill" but this would assume they always work.
The second problem is the "healing is possible" mindset perpetrated on social media. So many accounts focus solely on healing and recovery. They may have acknowledged bumps in the road or things that directly impact their recovery but the point is they have one clear goal: to get better. There's nothing wrong with wanting to get better. In fact, it would be much weirder if someone didn't want to get better. But getting better cannot be your only goal in life if you are living with chronic illness. Because if you have ME that means dedicating your entire life to a goal you are likely to fail at. You will either keep going down the endless road of more and more unproven treatments or find yourself out of options and likely very depressed after failing the one goal you had.
It is far healthier to have healed as a goal among many. To have other reasons to live and keep going despite chronic illness. To have a purpose as a disabled person besides becoming healthy. Our society assumes disabled people's only goal in life is getting better, the #HealingIsPossible mentality perpetuates that stereotype.
