7 mindset habits that helped me cope with my ME/CFS

[disclaimer] This is not a treatment, and it is not a substitute for pacing. ME/CFS is a serious, chronic, systemic disease (IOM, 2015). Nothing in this article should push you outside your energy envelope.

I cannot say whether any of this played a role in my improvement. What I can say is that it was the best friend I needed to stay sane and conserve my energy through this hardship. Take it as one patient's coping, nothing more. More context on ME/CFS and Long COVID here.

TLNS — Too Long, No Spoons

Coping with ME/CFS is about saving energy for what matters. These 7 mindset habits are how I stopped leaking mine:

Last year, I was struck with ME/CFS, it put me in bed, sometimes unable to even think. I am lucky to have gone from moderate to mild (my recovery story is here).

This mindset is the result of a year of iterations, definitely not my starting point. I was very different before ME.

Treating myself the way I'd treat a loved one

I used to be my own worst critic. Always chasing the best version of myself, with all the self-doubt and harsh inner talk that comes with it. I systematically expected more of myself than I would ever expect from someone I cherished.

This illness is already so hard to live with, and that old way of functioning was no longer sustainable. The constant need to do more, to be more, cost energy I did not have, and it ended in PEM.

So I learned, day by day, to be there for myself. To be understanding. To truly take care. To love myself like I never had before. I am not 100% there yet, but it feels so good to have someone in my camp, all the time.

One important nuance: if someone I truly cared about was wrecking their life, I would tell them and offer to help. I try to do the same with myself. I am on my own side, but I try not to be complacent.

Finding happiness in the small things

While being still, I learned more about happiness in one year than in the previous 28. I used to live for how awesome the future would be once I had "success." Of course that day never came: every time I reached a goal, there was another one to grab.

What changed things for me was a practice called the "Perfect day" meditation. I would visualize my perfect day, without any limitations. It felt amazing, and more importantly, it re-taught me how to feel good while my illness was still there. I practiced most days. Over time, that feeling started leaking into the rest of my life, and I became better and better at appreciating the small everyday things.

The lesson underneath: feeling whole right now, without needing external things, is what let me feel good despite the condition. It removed the "I am missing out" feeling, and it gave me the internal resources to keep going. Knowing this is easy. But it took repetition for it to work.

If you want to know what the research actually does and does not say about practices like this, I dug into it separately in some key mind-body principles and what science says on them. Short version: the mechanisms are studied outside ME/CFS, and none of them are established as effective for ME/CFS.

Not caring what others think about my ME/CFS

I cared deeply that my loved ones understood what I had. As long as the people dear to me got it, the opinion of doctors and acquaintances stopped mattering to me. I do not need their validation to know what I am dealing with: the National Academies' review of the evidence found that people with ME/CFS are more functionally impaired than people with type 2 diabetes, congestive heart failure, hypertension, depression, multiple sclerosis or end-stage renal disease (IOM, 2015). Energy is my scarcest resource. I refuse to spend any of it on convincing people who do not matter.

Staying hopeful, no matter what

Others have fully recovered? Then I can too. It might come back after I have recovered? Then I will recover again. I do not care what the odds say. My own life is at stake, and there is no way I give up on myself.

Staying hopeful gave me the mental resources to stay curious, open-minded, and to pace with discipline. Pessimism never brought me anything good. And I realized that being pessimistic to protect myself from disappointment was really my own lack of courage wearing a disguise.

No one is coming to save me

There was a period when I told myself there was nothing I could do, that my recovery chances looked terrible. The moment I gave up my own agency, everything got harder: no motivation to pace properly, no drive to look for solutions, no reason to hope for a better life.

So I took responsibility back. Not blame: getting ME was not my fault, and PEM sometimes hits even when I thought I had done everything right. But whenever I was well enough to look back at a crash, there was usually something I could learn from it, a signal I ignored, an activity I pushed too far. I owned those lessons and tried not to repeat them. Responsibility, for me, was about keeping my hands on the wheel.

Getting off the comparison train

I used to work at the edge of technology, and even then I felt I was falling behind. Now I was stuck in time, in bed, while my friends were moving on with their lives: getting married, partying, doing sports, advancing their careers.

Then I understood that comparison is broken from the start. How could I compare myself to people with completely different backgrounds, genetics, and circumstances? It is not a fair game. Every life is unique. What matters is how I handle my own boat in the storm, compared to how I handled it last month. That is the only fair comparison.

Staying curious and open-minded

There is still so much we do not know about ME/CFS and about the human ability to heal from chronic illness. People have recovered, with all sorts of different methods, and no one method has been shown to work. I learned everything I could, and discarded what did not hold up after some research.

Without that curiosity, I would have gone round and round inside my own limited knowledge. That loop always created more distress, and distress cost energy I did not have.

Coping with ME/CFS is about saving as much energy as possible for what matters: enjoying what I could and giving space for my body to heal.

These mindset habits are how I stopped leaking energy into self-criticism, comparison, despair, and other people's opinions. None of them is a treatment. They are how I stayed sane while pacing did the actual work.

I hope some of them are useful to you too.