I Am Whole: ME/CFS and The Building Blocks of Acceptance (Pt.2)
Part 2 of Accepting ME/CFS delves into active adaptation and self-love. For more on the push-crash cycle and developing a calm mind, check out Part 1.
Learning to accept ME/CFS instead of living in spite of it requires a lot of patience, personal development, and self-care.
It may seem impossible to overcome the feelings of loss and uselessness when you can’t even get up to clean dishes. When you have to fumble through the brain fog to formulate simple sentences. When you can no longer interact with your loved ones and friends like you used to because your light and noise sensitivities require isolation.
In my experience, these things impeded my ability to really…expand myself. I was so focused on trying to be who I was before the illness I couldn’t accept that I needed to change. To find a new way to expand.
It’s in this mode I built on an action I call active adaptation.
Experimenting Through Active Adaptation
There are no set rules for active adaptation. Nothing works equally for every sufferer.
For me, this meant being completely open to changing every habit in my life. It included writing lists of “to-try” and “didn’t work.” It has continued to mean being okay with longer periods of minimal work capacity. Above all, past and present, it meant recognizing in all things I wasn’t as well as I thought I was.
An example: I cannot work for long periods in a normal chair without massive discomfort and pain. Something about the position exacerbates ME/CFS symptoms in my joints. For a long time I just assumed this was my lot; that I was always going to suffer this.
By happenstance, one day I worked on a recliner. I found I was able to work longer than I had before. Eventually, I learned to adapt my working environment to my needs. I was able to work on the recliner using a lap desk and, when I needed to, could relocate to my bed if needed and still work.
For a healthy person, this may seem like a small thing. But, by adapting my workstation, I had excess energy to do work around the house. For someone with a debilitating illness, this is a major improvement.
At present, I’ve further adapted my working environment. I have a desk I work at with plans to buy an office chair with a leg rest and reclining function. I use the recliner now for reading and lounging, which still gives me the benefit of having joints with no intense discomfort.
I found it was important to recognize that failure didn’t mean the process was doomed to fail. In fact, since the process of active adaptation included experimenting with new habits, failure was built into it!
I expected myself to fail now for success in the future.
This is important for anyone looking for motivation to change. It’s not the actual things you do now that show your motivation. It’s the process of uncovering what works that really matters.
The openness of active adaptation gives me back some of my identity and self-worth. By trying, failing, and trying again, I remember that I am still alive, not a static caricature of a person. I am autonomous and creative. I still have the potential to make the life I want.
I began to love myself again.
Embracing Self-Love
Promoting self-love may seem obvious, but actually learning to self-love with a chronic illness is incredibly difficult. And, not as obvious as some might assume.
I wanted nothing more than to ignore my illness; to separate every atom of it from my consciousness and my body. I realized, though, that a denial of the ME/CFS was a denial of myself.
Like many struggling with ME/CFS, I refused to love myself with the illness because if I did, I’d have to accept it.
But here’s the thing:
Your ability to maintain a sense of self-love means recognizing that you are worth the effort, and no illness changes that. By taking yourself seriously and taking the illness seriously, you recognize those negative feelings are false.
Sure, it sucks to have ME/CFS, but it sucks even more when you abandon yourself as worthless. You still, after all, have to live with yourself.
This idea made me realize that I had a choice:
I could either see myself as a shadow of who I was or see myself as a survivor, dealing with truly difficult obstacles.
So, as I learned to accept ME/CFS, I measured my success not by how much money I made or how I accomplished my career goals, but by how I managed my battle with the constraints and difficulties posed by ME/CFS. How I came to find moments of joy and satisfaction even in the midst of illness.
My challenge became changing who I saw in the mirror.
Self-love allowed me to move on from the idea of two separate lives, the pre-illness and post-illness life. Self-love enabled me the recognition that I am the same person with and without the illness, that whatever happened or whatever didn’t happen, there was a wholeness to me.
There are no two lives, just one whole life. My illness doesn’t change that.
Self-love meant truly accepting ME/CFS, rather than treating it as some sort of malevolent invader. It also helped me face an unknowable future and embrace my vulnerability by recognizing the strengths I’ve developed through confronting my illness.
Self-love helped me move forward on my own terms.
True Acceptance and The Whole You
True acceptance is nothing more than the continued embrace of personal imperfection.
It is the culmination of separating yourself from the push-crash cycle, developing a calm mind, experimenting with new methods, and embracing yourself as you are.
It’s a personal practice — one which must be maintained — yet is crucial to moving from living in spite of ME/CFS to living with it. Acceptance of ME/CFS isn’t knowing you have a chronic illness; it’s the ability to calmly assess your needs, actively adapt, and love yourself for who you are.
It’s been quite some time since my 2017 relapse. The process of developing true acceptance of my ME/CFS has taken this whole time but it’s been worth it.
While I’m still learning — I may never stop learning — my perception of myself has changed. Now, oddly enough, in some ways, I am thriving like I never have before.
There is a philosophy related to kintsugi called wabi-sabi. It’s a Japanese aesthetic philosophy derived from Buddhism. The basic idea is the acceptance of imperfection.
I interpret it as the acceptance that, even if a cure arrives in our lifetimes, nothing will likely return me to full health. Nor will it wipe away years of illness.
And when we couple that with kintsugi, we hold our broken lives in our hands and see the broken remains as something not to be tossed away. So, we collect those pieces and treat them with care.
We build our lives back together with the calm understanding that they won’t look the way they did before. We remake our lives, forming them hopefully into something richer and more beautiful than before. Now, our lives reflect the journey we’ve been on.
Life is, after all, imperfect. Accepting ME/CF doesn’t change that.
Acceptance merely reinforces what we already know. We won’t have that healthy self in those fictionalized futures, nor can we go back to live in a romanticized past. We can, however, make our present that much better by embracing ourselves, ME/CFS, and all.
True acceptance is, after all, a practice of letting go of what you can’t control and reclaiming the power you always had. It starts with recognizing a single truth:
You are whole.
Whether you are a veteran of the ME/CFS community or recently fell ill, I want you to know you are whole, no matter what doctors, friends, family, or you say about yourself. There is no shame in ME/CFS.
