My recovery from ME/CFS - part four: bends in the road

If you clicked on this after Sunday, September 28, there’s about a 75 % chance you got here because of my YouTube video. If you’re struggling with English, your browser likely has an in-built translate function somewhere. And in case you haven’t done so, you should read the previous parts of the series first: prologue, part one, part two, part three.

I thought about this next part for many weeks. I feel like now is the time where we leave chronology behind. It doesn’t make sense to guide you through every bend in the road I experienced during the now six months of my recovery up to this point - not that I would even remember all of them anyway. Instead, I now want to focus on some of the things that I learned, acting as tent poles during this crazy storm. As always, these things were true for me, they don’t have to necessarily be true for you - although I have a hunch that many others can relate. This post will be somewhat darker than usual (not exclusively dark though), but just as important.

Let’s start off by acknowledging that either way you go about ‘recovery’ (more on this idea further down), it is probably the hardest thing you’ve ever done. So naturally, you will become extremely fed up and desperate with it at some point. I certainly did. Many, many times. I think especially when you’ve been through shit time and again, health-wise and mentally, and each challenge seemed to be harder than the one before, you ultimately ask yourself: Where is this going to go? And am I maybe, just maybe fucking my life up on purpose? I mean - and I was never inclined to think like that before - no one deserves the level of suffering you go through on a daily basis with an illness like ME/CFS. No one. And just for the record, guilt-tripping doesn’t help either.

This is fear. It’s the fear of having seen darkness and knowing it can come back. It’s the fear of reaching a point in time where you will no longer be able to bear darkness. I think it’s one of the most central issues in any life-altering event or process, and I have returned to it many times, which is why I’m addressing it here. No sugarcoating - there are moments where you simply do not want to exist, and you do wonder if there will come a time when you will try to facilitate that non-existence yourself. Suicide among ME/CFS patients is well-documented.

The human body and brain have an astounding capacity for handling daily pain. It’s the mind (and, if you believe in that, the soul) where the long-term effects show up much sooner. For me, a couple of things have happened around that issue over time and I’m not yet ready to share all of them here - some will take a lot of explaining anyways. But here’s part of what helped me not succumb.

First of all, I think many of us have very little social context for darkness because society practically doesn’t address it. A lot of us, in the context of trauma or other experiences, ultimately know what it’s like to feel logic, physics, personalities and reality itself bend and dissolve in front of your eyes because either you are in too much pain for these things to still make sense or you have been exposed to events that are so horrible that there is no way to connect them to the world you know. I’ve seen both. But until trauma therapy, I had absolutely no one to relate to over these experiences. With the following effects:

Any experience of ‘falling out of the world’, as I put it in my younger years, was incredibly isolating. Because I couldn’t talk to anyone about it, it also had no language. Which made it even more frightening. And because it didn’t seem normal and it came with all this intense discomfort, I did everything in my power to stay away from it, fearing it might lead to … well, who was to say?

In any case, staying away didn’t work. ME/CFS has a lot of darkness-inducing elements. Your perception is altered or dampened, your physical abilities reduced in this weird, inexplicable way, you often experience the dread of not being able to escape your own body with all these intense symptoms. And you’re being told by medical professionals that this is now your life.

In some sense, that’s true - living with the illness, even if you then recover, is your life for a long time. So in order to not dissociate all the time, I had to find a way to integrate darkness into reality. Ordo a chao. I researched, talked to my therapist and found some answers for myself. For instance, darkness is normal. It’s a normal response to circumstances that don’t match anything you’ve previously seen. For me, the first conscious memory of this acid-like feeling in my whole body was when I witnessed a roused cow violently attack a drunk civilian in an arena, to the (apparent) bloodlusty pleasure of the onlookers. I remember how limp the man’s body looked as the cow was thrashing it against the ground. He was carried away on a stretcher and I don’t know what happened to him. I was still a kid and the experience horrified me intensely. None of it seemed to make sense in the world that I had thought I was living in.

So, darkness as a response is normal. And in order to establish this normalcy to your nervous system, you have to talk about it. During my recovery with ME/CFS, I kept a ‘burn after reading’ journal, meaning it was a place where I was brutally honest in sharing the feelings I had in that very moment, even if I deemed them ‘irrational’. Experiences of reality-bending darkness, induced by long stretches of brain burn (as I still like to call it) or ongoing fatigue, were a common topic. I was allowed to express how upset I was about that. I didn’t have to put on a rational, brave face. And if I didn’t want to exist in that moment, I also said that. It was liberating and it brought all these things into the light and out of shame.

Again, this is only my own reasoning here, but I realized that making it okay to feel like I didn’t want to exist sometimes, because of what I was going through, was already taking away a lot from that wish. I mean, it’s not that I wanted to be dead, I just didn’t know how to handle that kind of life. And part of the answer for me was to make nothing off-limits. There can be no taboos in an existential situation like this one.

The other thing, and that’s maybe even more difficult to explain, is that I’ve found that even darkness is less dark when you are able to understand it better. I have had the same experience with fear, which is an emotion I tried to avoid rigorously for a long time, thanks to my panic attacks. It was only during the last few months that I started to integrate and see it as a normal emotion that, slowly, over time, you can sit with and learn about.

The same applied to darkness. Up until recently, I was convinced that in order to stay ‘sane’, I couldn’t sit with darkness too much (classic fear response). Which obviously resulted in me always being on the lookout for darkness and making sure it stayed away. Which is called hypervigilance and exactly the type of thing we don’t want when our nervous system is dysregulated. Instead, I now slowly start to lean into it for a while. In order for it to not consume me, I had to start looking at it with curiosity. I know this can be confusing for anyone who’s not familiar with therapeutic concepts but this has been backed up by my own therapist and many more and it was an incredible relief to know that there is a process for this - other than trying to ignore something like this for forever.

This is a difficult topic because this type of work, in my mind, requires professional help. At the same time, not bringing it up here and sharing how I dealt with it would be a disservice because it was and is a crucial part of my recovery - and not everyone always gets the professional help they need, for various reasons. So stating here that even something like profound inner darkness can be dealt with is important. And simply saying ‘if you feel depressed, go see your therapist about it’ creates an exclusiveness around this information that certainly didn’t serve me when I was in that situation.

Another thing that ties into this that I have to mention at this point is recovery as a concept itself. You can’t imagine the relief when you hear someone else’s story for the first time and the idea of getting out of that illness becomes a possibility all of a sudden - only to then be backed up by hundreds more of these stories. I don’t know if I would have done any of this hard work if I hadn’t seen it take effect in others. You lose your trust many times over.

But. As exciting as it is to see people speak of themselves as ‘100 % recovered’ (and I have no reason to doubt their stories), it will eventually create a certain pressure to get there yourself. No matter how much you try to avoid it, you create a timeline in your head. In my case, after listening to about twenty different recovery interviews, my vague hope was that I was going to be able to recover within maybe four months. Which, on the one hand, was amazing because that felt like a manageable timeframe. If my estimate would have been years, I don’t know what I would have done. However, I realized after about three months of recovery I was starting to get stressed out because, although I had made it far, I wasn’t ‘there’.

I then adapted my timeline, riding that fine line between motivation and pressure, to allow for the fact that due to my previous health complications and ongoing trauma work, some parts would probably need more time and that was okay. Still, and I only realized this recently, I was walking around with this idea that anything other than a full recovery couldn’t be my goal, and as (mostly) convinced as I was that this was going to work, it also still created a lot of pressure. Not only because sharing this story publicly meant that some people would expect me to fully recover in order for my words to have any value. (Which is bullocks - look where I am now versus where I was; even partial recovery is an immense victory.) It was also because what drove me to this idea of full recovery was that I never wanted to deal with any of the symptoms of this illness ever again.

Understandable, right? Which is why we often don’t question the pressure we put ourselves under in these situations. Of course you want to get better! But it still doesn’t help, because any time something goes ‘wrong’ in recovery for a bit more than a few days, I would start to get ever so slightly frustrated, trying to come up with explanations. The best way to deal with symptoms, in my mind, is to let them be as much as possible. That’s difficult to do when you’re waiting for them to go away.

I now understand recovery as a process, not a goal. And it teaches me a lot more about how to deal with life whenever I don’t look at the seemingly bright and perfect future where I will not be in any pain, ever, for the rest of my life (sure, bro). There’s an incredible humbleness in this approach that seems self-sacrifical and masochistic or downright crazy to some, and I understand that. But so far, this is the best way I’ve found to deal with a situation in which your consciousness has no control - except for how much fear you add into it as fuel - and there is no indication of a linear timeline.

In short, six months into my recovery, it doesn’t serve me to keep my eyes fixated on the horizon. I take the daunting and often still overwhelming invitation to stay in the present, with all the discomfort that will often present itself, and accept what each day can teach me. There is so much I never even knew. Obviously, my wish is to be in as little pain as possible in my life, and I’ve come very far already. But I’ve learned that I can’t facilitate it by pushing against pain, fearing pain or ignoring it. So instead, I sit with it, just like I now sit with joy when it comes (and it does). This, I think, is the way.