6 Lessons From Living With ME/CFS
Living with ME/CFS is not a matter of coping. It’s about consistent learning and adaptation. Openness to change. Every day is another experiment for improving life management.
The goal of living with a chronic illness isn’t living in spite of it, it’s living alongside it.
Nothing prepares you for ME/CFS. One day you’re healthy, the next you can’t get out of bed. The obstacle of chronic illness is massive and learning how to thrive with it takes a long time. You don’t learn everything at once; it’s a constant buildup. You build a platform brick by brick on shaky ground. Some bricks will fall, but you have to learn how to replace what was there. With patience and drive. You can’t survive by moping.
I’ve learned some things in the decade since ME/CFS turned my life upside down. These insights are beneficial whether you have a chronic illness or not. Betterment is for us all. I hope you find value in them.
1) Trying and Failing Does Not Make You A Failure
Nor does it mean you are stupid for having tried something new.
To me, trying and failing is evidence of success. It means you haven’t given up. How you face failure and learn from it makes all the difference. It only takes one success to prove all past failures were worth the effort.
When you pick yourself up after each failure, it shows you haven’t given up. You show bravery and grit.
I know I am setting myself up for an episode when I try something new. It’s always a possibility because ME/CFS is a crippling illness. But I live by a simple rule: everything I do is malleable. If I believe my current way of life is the only way to live then I’ve closed myself off to new possibilities. I surrender my autonomy to the illness.
I would rather try and try and fail and fail than pretend what I’m doing is absolute. Because it’s not.
2) Be Kind To Yourself
We are our own worst critics.
Yet, we know we can’t control everything that happens to us. Not everything goes as we want and still, we make ourselves to be our own villains. Perfectionism isn’t useful. Perfectionism causes self-harm and produces more negativity than anything else.
You are your biggest asset.
Self-kindness is the hardest part of living with chronic illness. Beating myself up for needing more rest or hating myself for the joint pains doesn’t help my situation. Being hard on myself for having limited energy and intense brain fog is nonsense. I can’t control that I have a chronic illness. I control how I treat myself.
3) Take Time to Relax
Relaxation is surprisingly difficult. I don’t know what to do with myself when I’m not doing anything.
Our society is built to endorse a specific work ethic. One which encourages burnout and fiery competition. We forget the present in favor of a fictional future. We lose our balance and stumble blindly forward. Sometimes to success, often to failure. Always for the benefit of some faceless shareholder.
In living to please others we forget to relax. Instead of being essential, we think it’s counterproductive. Relaxation shouldn’t be hard to do.
When we relax, we allow ourselves to be in the moment. To be at peace, mindful of ourselves. Having ME/CFS makes this a challenge, but it’s worth the effort. Life is a constant cycle of discomfort, pain, or fatigue. By relaxing, we can mitigate that cycle and it's as true for us as it is for healthy people.
It’s okay to be okay, even for a moment.
4) Don’t Live in the Past
We all have things we want to change. Actions we made that we now regret. Decisions that led us down different paths to the ones we were on. Regret is a normal part of life. What’s not okay is to trap ourselves in past memories. It’s not healthy; it’s toxic.
It’s easy to sympathize with that mindset though. Living with a chronic illness is a potent environment for that mental state. Escapism is an easy out for pain. But it’s that feeling which makes it so important to stay fixed in the present.
When we leave the present for past glory or fictional changes, we allow external forces to dictate our lives. We lose the ability to choose. Our autonomy for self-definition is lost because we decided yesterday was more important than today.
5) Accept Help
You can’t do this alone, and no one else can either.
If there’s one truth everyone should learn from chronic illness, it’s you can’t do this alone. You need help. People want to help. It’s a hard thing to accept the outstretched hand, even more so to be the one who reaches out.
When I know I am nearing my limit and I have things still to do, I delegate. I determine which tasks can be left for another day and which need to be done now and ask for help. Our personal lives are as much about interaction as our social ones. Our days are richer for allowing others to help us and helping them in turn.
It’s not shameful to ask for help. Independence only takes you so far.
6) Listen to Your Body
It’s easy to forget to take care of ourselves. We get so caught up in our lives we forget healthy habits. We forget to stretch the muscle of our minds. When we aren’t mindful of our needs we can’t make adjustments. Or, we overstretch our limits.
When we keep overdoing it, we crash.
Living with ME/CFS requires a deft hand and mind. I have to know my limits if I’m going to be functional. I have to stay connected to myself in a way I never was before. When I lose that connection, I know I’m heading for a relapse.
It’s a constant learning process, but when we listen to our bodies we improve our functioning. We improve our output. We are healthier — mentally and physically — and can handle things we couldn’t if we were stretched thin.
It takes months, even years, to figure things out, but it’s worth the effort. It only benefits you.
A Life Worth Living
If life is a game, having a chronic illness is an accidental hard mode. It forces sufferers to approach life differently. That’s why I think there’s value in sharing these lessons. Life gets harder, but our ability to perceive life improves.
That perspective is not guaranteed. It depends on you.
