Fighting the Denial of a Chronic Illness

I had initially intended my last article to be the final chapter in the Acceptance series of posts. However, recently a friend asked me a very poignant question borne of that post, which prompted this one. It is sort of an extension on my last post on “how to seek acceptance,” in answer to her question:

How do you fight the denial that creeps up even you mentally decide that acceptance in the best way forward?

In my best attempt at a response, I thought I would share my story, with more personal details than the previous one, about how I fought denial while in search of acceptance.

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The convoluted path to acceptance

If you’re a frequent reader of this blog, you probably know that I used to be a very ambitious, go-getter type of person. I worked hard, and for the most part, enjoyed working hard because I enjoyed my work! The body was just a vehicle to get me about, nothing that needed any tremendous amount of attention. The idea of “listening to the body” was fairly foreign, it sounded “whiny” to me, like a hypochondriac. And this attitude meant I landed myself in frequent flares because I would ignore my body and what it was trying to say to me.

My avoidance of what the body was trying to tell me was not without reason. I felt like if I were to listen to it, I would never do anything, because I was always tired and achy and never really wanted to do anything at all! Every morning was a struggle just to rise and dress for work (and it kind of is even now). Mind over body, I kept telling myself, however. I just needed to will myself into breaking through the chronic illness mode. But the walls proved harder than I expected. And I almost always lost that battle.

body-mind

It took me a lot of soul searching to realize that listening to my body is not being beholden solely to its desires.

I was afraid the latter would trap me into the “this is all that is possible” box, and I would not be able to see opportunities outside the box, even if they beckoned at me. I refused to accept all that my body felt or felt possible of it, but I realized that I needed to hear what it said. Then I could evaluate it in my mind, and decide on the best course of action. Mind and body needed to go hand in hand, not fight against each other. The mind still rules, but uses the body’s counsel, as it were.

And that, in a nutshell, is the essence of what “acceptance” has meant for me: Listen to the body; push it but without pushing it over the edge. The mind is still the king, the one who ultimately decides what to do, but one who uses the queen’s (body’s) guidance and counsel. It does not have to always do what the queen wants, but the mind-king must keep the queen-body in the back of his mind so as to not offend her. This idea of acceptance is distinct from “denial,” where the mind rules entirely by itself; and far from “resignation,” where the chronically ill body calls all the shots.

What convinced me to finally embrace this meaning of acceptance (and quit denying my body all of the time) were three pointed realizations, that I arrived at through many months of soul searching and internal dialogues:

1. The first thing I realized is that my old state is not coming back – and certainly not if I keep fighting myself like this!

Educating myself about FM and chronic fatigue helped me the most to come to this realization. Current understanding suggests that these are disorders of central sensitization. A maestro from hell, the brain and nerves in a fibromyalgiac have become so good at shooting off pain signals that they overreact to every perceived stimulus by doing just that. Fatigue and sleep quality are believed to linked to similar pathways, thus making us feel tired all the time (as if just fighting the pain wasn’t tiring enough!). The upshot of learning the science behind the condition was the recognition that fighting my body, and in turn having more pain because of it, is only setting me up for long term failure. The more practice the nervous system gets at sending pain signals, the better it is ever going to get at it by strengthening all those overactive pain-response pathways even more. Therefore, in relieving my body of as many perceived pain signals as possible, like allowing myself to rest as needed, I am really doing myself a favor. Perhaps, in time, it might even allow the brain a chance to “cool off” its pain response a bit.

'Slow down - you'll live longer,'
The wisdom of a snail

If you are curious to learn more about central sensitization, check out this video in the blog Sunlight in Winter, whose author does a beautiful job of spreading awareness for the science behind the syndrome in patient-understandable knowledge.

2. The knowledge of the science behind central sensitization made me realize that I needed a truce with my body. And the said truce is my only hope of getting my life back.

It may not be the life I had initially planned, but if I didn’t make some kind of peace with my disorder, I would not have any kind of life at all! Getting this through my thick skull was a huge step towards acceptance for me.

This truce was not giving in to the disease, or resigning away to the illness, but simply making a conscious decision to listen to my body more. Like most things in life, it is of course easier said than done. I have struggled with it off and on, along with my faith that this is the sensible thing to do, and I am still in the process of learning how to listen well.

As a scientist, I am quite used to observing the outside word, our experimental universes. But rarely do we use ourselves as the subjects, while also trying to be the objective observer of ourselves! I have found that it can be quite difficult at first, and really easy to slip up on even after doing it for a while. But what has probably helped me the most to detach and observe myself in as unbiased a way as possible is mindfulness meditation. I have trained myself to keep a piece of me in my head to keep a watch over myself, my thoughts and my body. Sometimes this watchkeeper may bring to my attention my negative train of thought, or at others, remind me to relax my shoulders and fix my posture.

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Mind and body must work together to find peace

Many of my blog posts emanate from me tapping into this watchkeeper to see what she has observed, and then the posts are the results of my analysis on those observations. She has given me many insights into my thoughts and feelings, especially on the more unpleasant aspects of dealing with a chronic illness. I am not a believer in wishing negative thoughts and feelings away (I know from experience they don’t go anywhere, they just fester under the surface). So I decided to work through them by writing/blogging. Aside from being cathartic, I have also come to greatly appreciate the support of others in the chronic illness community, especially those of us who are also young, and face that additional stigma of “oh-but-you’re-so-young,-how-could-you-possibly-be-sick.” Being around others with similar conditions and associated feelings, and being able to share in their challenges validated my own.

Through my blogging experience, I also realized that being surrounded by accepting people also promotes acceptance in one’s own heart. You see that a chronic illness does not have to be the end of the world, that it is possible to fight it without killing yourself (metaphorically) in the process, and that there can be a life after chronic illness. I think all of these factors played a part in my being able to fight the denial that kept creeping up from time to time.

3. As I slowly came to terms with the idea of acceptance, I realized that not everything about my new life with FM was bad.

It’s just that the benefits in my new life aren’t always the things that are thought very highly of in our fast-paced modern society. For example, I am now a much calmer person, more patient than I used to be. But that permanently changed how my boss views me, because in academia if you’re not a highly ambitious overachiever, you might as well be nothing. But in my personal life, or even my professional life (as a teacher and a mentor), I realize the patience that I have gained has served me well. I feel, overall, more balanced in many ways than before, when I lived a lopsided workaholic world all the time. I have been able to reconnect with my husband, and feel a measure of mental peace that I never knew could be possible.

This recognition, that it’s not been all bad since FM struck, was a major leap forward towards accepting my my chronic condition.

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Seeing the forest through the trees . . .

These three major realizations, mostly arrived at through internal deliberations, were my stepping stones to a point where I could stop kidding myself that the chronic illness doesn’t exist, or that I can somehow “wish it away.” Once I had these down, the activities I described in my last post helped me work through my thoughts and feelings (many of the ones I have talked about here), which helped me inch closer every day towards embracing acceptance.

Acceptance of a chronic illness, however, is a very private matter, and can mean something different to each sufferer. So I, by no means, wish to suggest that this is a fool-proof how-to guide that should work for everyone. This is just my story. It is my hope that reading this story might trigger thoughts in someone else in a similar boat, so that they can make their own journey, taking their own private paths, towards their own personal goal of acceptance. In there, lies my satisfaction as a chronic illness blogger.

Gentle hugs,

Fibronacci

 

MORE IN THE ACCEPTANCE SERIES:
Part I: A Lesson in Perspective and Acceptance
Part II: What is “Acceptance”?
Part III: How Acceptance can lead to Happiness
Part IV (A): Seeking a State of Acceptance 
Part IV (B): Fighting the Denial of a Chronic Illness

 

READ MORE ON ACCEPTANCE AND HAPPINESS:
On Acceptance and Healing
What does it mean to be chronically ill and happy?