How I Held On to Hope During My Long COVID Recovery (Pt. 1)
Holding on to hope was crucial for my recovery. I used specific tools for it: Building my "Hope List", being delusional on purpose (yes, you read that right!), and learning from others ahead of me.
I’m not a doctor, nor a scientist, and the following is not intended as medical advice. I’m just one person who has (mostly) recovered from a severe version of Long COVID and has done a ton of research, sharing my experience and learnings. Please always listen to your body, and always ask your medical providers what’s right for you.
Hi friends, hello!
It’s been a few weeks since I’ve posted. Between enjoying the summer, a bit of travel, continuing my breathwork training and sorting out some big life stuff (all good things!), I haven’t been able to carve out much time for writing. The weeks slipped by, and I guess that’s how summer goes, and should go!
In the last few posts, we’ve started looking at the first two pillars in my recovery framework: tools to recondition the nervous system, and tools for rebuilding the body. Today I’m going to share the first tool out of the third pillar: the emotional side of Long COVID, ME/CFS and recovery. I want to talk about the importance of hope, and what helped me keep it.
Today I’m going to share three of the tools I used. There were more, so I’ll likely write another post or two on this in the future, as well.
Mid last year, a few months into Long COVID, my health had declined so much that I had become completely confined to bed. There was no explanation from doctors, I was just told that there wasn’t enough research yet. We had tried all the available medications, and they either did nothing, or had made me worse.
While trying to find answers, I frequently came across recovery prospects. The numbers did not look good. They were generally somewhere in the single digit percentage after a couple of years, with no longer term research available yet. The recovery numbers for the very similar ME/CFS and other post-viral conditions, where there was longer term research, looked even more bleak. The prospect of spending years or even decades in bed, requiring round the clock care, and in extreme discomfort every day, were, frankly, horrifying. If you’re here reading this, I probably don’t need to tell you that.
Why hope is crucial in recovery
At that time, I had an intuitive sense that it was really, really important to keep up my hope, despite the daunting prospects. I didn’t know it then, but I do now: Emotions directly impact the nervous system (I’ve tried to explain this here), and the nervous system, in turn, is a key influencer to our physiological responses, including those involved in healing and recovery (several of the resources I shared here do a great job explaining the physiological mechanisms).
That means in reverse, that if we maintain hope, we can positively impact our nervous system, fostering a state in the body conducive to healing and recovery (see here and here, too). This is particularly important in conditions with nervous system involvement, like Long COVID and ME/CFS. I’ll explain all this in more detail in a future post, today I want to focus on practical tools.
So knowing how crucial hope is— how do we find it? Particularly, when we aren’t getting much hope from doctors?
I used several tools to do that - at the time, mostly intuitively, and later I learned it in a more structured way from the online program I mentioned in my foundational resources post, ANS Rewire.
Tool 1) Being delusional :)
Like most people, when you have doctors shrugging their shoulders and you know the low recovery prospects, it was hard for me to keep hope. There were a few weeks especially, before I found things that gave me glimmers of hope, when I didn’t know how to deal with it all - I just tried to get through each day, supported by a couple of close friends and my mom.
Eventually, however, despite this rationally not making a whole lot of sense, I started focusing on the fact that some people do recover within a year or two, even if it’s only a very small fraction. I started telling myself, Why can’t that outlier be me? Statistics are real, but they only represent general trends, not individual outcomes. Each person’s health journey is unique, and there are always outliers. So this small possibility is what I focused my mind on.
I also learned that there was a lot I could do to influence my particular odds, even from where I was at the time. So I made a point to focus on the stories of those who were in a very severe state like me, and who had recovered. And on what I could do to become one of them.
I made sure to spend what little energy I had on taking active steps towards recovering my health, every single day (here’s my overview of active steps I took, and I’ll write more on my daily protocol in that time, in a future post). I spent as little time and energy as possible worrying. Admittedly, worrying is hard to avoid when the body is not cooperating at all, even with the absolute basics, serving as a constant, harsh reminder. When you can’t see any improvement for months. When, on top of that, you’re reminded of the objectively dire prospects almost anywhere you turn in your search for answers and help. So it wasn’t possible to push the worrying aside completely (for me at least, initially). But I when I did worry, I tried to notice that quickly, and actively engage in strategies to distract myself, and to remind myself of hope (see next tool). This was a process, it wasn’t immediate for me— but I got there once I put my mind to it. It’s a learnable skill. Already having a meditation practice really helped with this, because the noticing and redirecting of thoughts is what you practice in meditation. I’ll write more about that in another post, too.
On the other hand, I also started to ignore (!) all the research and any articles citing the low recovery prospects. For someone who thinks of themself as a pretty rational and science-focused person, that was a very big leap. In other words, I was, deliberately, becoming a little delusional. To be clear, I didn’t think that those data points were incorrect — I believe that they are objective. However, it was clear to me that focusing any of my attention on them wouldn’t help me, and would in fact impact me negatively (my mental health at a very minimum, but likely also my physical health). If my options were A) be delusional and get 1% better, or B) be completely objective and not get better, then I’d take the 1% improvement every time. If you also find this difficult (I did at first), think about it this way - we all know that the Placebo effect exists, i.e., that what we believe impacts our health. Why not use that effect to your benefit?
I applied the same tactic, ignoring anything that wasn’t useful to recovering, to any other data points on the seriousness and irreversibility of my illness - the consistent stories of people sick much longer than me, new research showing irreversible damage that the virus can do, whatever else. I ignored all that. I left Facebook groups, unfollowed people, stopped reading anything that pointed in that direction.
Tool 2) Keeping a “Hope List”
Another helpful strategy was keeping a list of promising things to try, which I’m going to call my Hope List. This list included possible treatments, medications, knowledgeable providers, online programs and other recovery tools. I found those in forums, books and articles, and heard from other patients, and eventually also from the two doctors I found who had expertise in Long COVID. Anything and everything that seemed like it had potential went on the list.
The list wasn’t fancy - just a note on my phone. It was initially just meant as a mental crutch, helping me remember options while coping with severe cognitive symptoms like loss of memory. This note over time turned into a “backlog”, a roughly ranked list. Whenever one treatment hadn’t panned out, and it was time to pick my next “bet”, I’d look to this list.
Systematically, I went about trying the options on my list. Each intervention could take weeks or months to show effects, and I had to try and isolate its effects before adding something else (this was in case a treatment were to make my condition worse, as had already happened with several medications). So trying things one by one took a long time. It was key to be selective about what to try.
The treatment options on my list ranked from “backed by solid scientific evidence” to pretty obscure / untested options, so knowing what was most worth my energy and resources was key. I developed best guesses (just gut feeling, again nothing fancy) for which options
(1) were most likely to yield positive results,
(2) had the lowest risk of adverse effects,
(3) and required the lowest investment in terms of energy/out-of-pocket costs/trial time.
That gave me a good sense of what I wanted to try next.
But as importantly, this list gave me hope. I looked at it whenever I didn’t know how to keep going, when yet another long awaited doctor’s appointment had yielded nothing but crushed hopes. In those moments, the list was a reminder that there were still options out there for me to explore, and other things to try. It was a reminder that my state of complete disability wasn’t yet the end.
I kept adding new options to this list for almost a year. I kept that up until I was certain that I had found a combination of things that would take me to full recovery. And until my hope wasn’t at risk of wavering anymore.
I’ll share another time what exactly was on my hope list, but for now, here’s what it looked like. Just a simple note on my phone, that was all.
If you don’t have a recovery Hope List yet, I’d highly recommend you start one. It doesn’t have to be fancy (mine wasn’t, as you can see). You can pull it out whenever you need to find hope. And any time your body is in a good enough place to run another experiment.
.
Tool 3) Leaning on Those Ahead of You for Hope
If you’ve read my previous posts, you already know that I’m a big fan of recovery stories (a few good sources for them in my resource post). Whenever I doubted if I’d ever be able to get 100% well again, the interviews of other people who had recovered were my reminder that it was indeed possible.
The same is true for people who haven’t fully recovered yet, but are further ahead on their journey, and have advice to share. There was one guy at the Long Covid clinic I was eventually able to attend, who really helped me find more hope, too. During one of the group Zoom calls he unexpectedly messaged me. We had never talked to each other, he didn’t know me, I’m not sure what prompted him to reach out — but I’m grateful he took the time. He said “I was exactly where you are now” (I was bedbound at the time, not able to sit up for the Zoom call), and that he was now back to working 80% in his old job again. Just hearing that he was mostly back to normal life meant the world to me. I’ve thought of that many, many times since. I’m glad he was kind enough to connect. So if you have access to a group coaching program where you’re in touch with others on the same path, those can be a great option (e.g. I’ve heard good things about the Fern Programme, or in Germany, the ReActive Programme).
Benefiting from others who went out of their way to share their stories is a huge reason I’m writing this newsletter— I know from my own experience how important it is for these stories to be visible.
LMK if you think this is helpful, and I’ll share more in future posts. I’m curious - what tools are you using? What has given you hope on your journey so far? How do you cope when it’s hard to hang on to it?
Sending some hope in case you need it today,
~ Nicole
I’ve become curious about the relationship we have between hope and belief and the part this plays in our wellness, or lack thereof.
At one time it felt like all I had was hope, but when I looked back there was the belief that “I matter. My health matters”. I really imbed the belief into my every day.
What I’ve realised in my own recovery journey is that there is no interest in it in the medical field. So if there is no interest in recovery then how can they possibly tell us what’s possible or not possible?
I truly believe that the minuscule numbers for recovery need not be this way and the possibility is much higher than we’ve been led to believe. It’s the lack of insight, education and understanding that surrounds it that’s the challenge. All of which can only come about with interest.
I also keep one of these lists! Spreadsheet version. It's huge for reminding me that there's always a new avenue to explore. My partner and I talked a lot about never pinning everything onto one solution like its the last hope, because every time either one of us spends some time doing research the list rapidly grows again. Also a lot of little things have contributed to improvements so it's been an incremental journey rather than a single flashy solution for me.
It's pretty funny how some ideas on my list seemed ridiculous early on, and I never expected to actually try them, but when enough time passed, they started to look more and more reasonable until they found their way to number one. Some of those wildcards have gone well - others, not so much!