Honoring Our Illness Journey

by | May 30, 2024 | Awareness Day, Fibromyalgia, Long COVID, ME/CFS

Honoring Our Illness Journey

Today I am going to talk about something important which is honoring our illness journeys. When we talk about honoring our illness journeys what does that mean? Honoring includes 2 things: 1) respect, and 2) esteem. I think these are two important sequential steps in facing a serious illness. I want to propose to you that honoring our illness journey is a method of healing; and as you hear me talk or read these words, depending on where you’re at in your own illness journey, you might have a knee-jerk resistance to the idea of honoring your illness experience, and that’s okay. I can say, personally, when I first became ill I was not in a space to honor my illness journey and it took me some work and time to get there. I needed a guide. I needed a map; an understanding of this process. Given this, I think it’s helpful if we break this process down and turn our focus to the first sequential step of honoring, which is respecting our illness; and ask, why would we resist or refrain from doing this?

I think back to when I was first ill, how much I would resist the idea of accepting and respecting my illness because I was overwhelmed by the disorientation of the whole experience: multiple disabilities hitting me at the same time; difficulty in doing basic tasks which were never a problem for me before; the frustration and embarrassment of not being able to fulfill expectations, or duties and obligations; and the concurrent anxiety around the mystery of what and/or who I was becoming: all of these contributed to a sense of overwhelm that enveloped me as a fog of pain.

With the physical loss and resulting limitations came this incredible far-reaching vulnerability that I was forced to touch into in a pervasive way, at a time of life when I was not wanting or expecting this. In an effort to make sense of this, to gain some sense of order, I clung to the idea of fairness as I processed my situation. “This is unfair this is happening to me. This is unfair that my body is doing this. This is not how my story was supposed to go.” And in response I became incredibly angry and hardened my frame against this experience, this life and my body. What I didn’t realize then was that this was a counterfeit way for me to seek power amidst vulnerability; the idea being if I can get angry enough and then turn towards judgment and blame as both validators and reinforcers of my anger, I can have respite from that vulnerability and it will direct me to solving the problem. And so I first ended up blaming myself. “What did I do to cause this? How am I making it worse? If only I hadn’t…”

I falsely bought into the idea that if I could judge and blame myself that meant I was responsible for this, and thereby I would have control to stop this disease. This judging and blaming process can be so nefarious and resilient within us, and it was in my case, because when I wasn’t blaming myself, I was projecting blame outward. It was this person’s fault that I was going through this experience, or a past situation of stress I was involved in and the people around it contributed to the development of my disease, etc. when I look at this with self-compassion, I can see it all for what it was: me going through something that felt, and was, overwhelming to me at the time; and desperately seeking some kind of sense and order to what was, is and can be a chaotic experience; as many of you know all too well. Yet, when I met my illness journey with anger, judgment and blame, I became incredibly resistant to my own experience and therefore didn’t respect it, and consequently was nowhere near honoring it. It becomes difficult to honor what we are resisting and hating. I was stuck. So, at this point, a very important question becomes, what do we come to understand about resistance? One thing I teach my clients is that where there’s resistance there’s typically fear. And what do we know about fear? Fear needs to be identified and named. Fear needs to be critically challenged. Without this process, we slip into being unconsciously driven by both our anxieties and our shame.

Chronic illness naturally makes us more vulnerable, and as human beings we tend to have this propensity toward shame in relation to our vulnerabilities; there’s this kind of idea that the more vulnerable we are the more rejectable we are, and the belief that rejection is unbearable; and so in response to our shame we become attached to denial, which is a form of hiding. For shame to remain, hiding and secrecy must continue; and with shame and hiding, all the while, we are reinforcing this false and disempowering idea that our illness journey is dishonorable; when nothing can be further from the truth. Without recognizing this we come to falsely believe that there is not something of worth or value in this process, this process of illness and the normality of existing in these: living, breathing, growing, aging, declining, and eventually dying bodies.

The shame and judgement we can experience can contaminate our self-conceptualizations as people living with illness, leading us to falsely drift from the truth that our worth is immutable. As a person facing chronic illness my worth is not dependent on some arbitrary, relative and narrow definition of productivity, or being absent limitations, or not needing help. These are common false ideas we connect to worth. And if we are not finding our way through feelings of unworthiness and shame related to our illnesses, we are typically constructing a dark narrative around our situations, leading us to reject our experiences. So deconstructing negative predictions we have about our illness identities, and trajectories, becomes an important part of cultivating capacity to honor our illness and lives.

Without conscious effort we can see ourselves cyclically reenacting misguided strategies:

  • holding ourselves to unrealistic and self-defeating standards,
  • the overwhelm often derived from not accepting limitations and having appropriate boundaries,
  • indulging unregulated fear and un-reflected dark conclusions about ourselves and our futures, and
  • the attachment to a false idea of what we so frequently call, “fairness.”

When we see through these things for what they are, which is ineffective, we can be liberated from shame and blame and in doing so, we move to a core component in honoring our journeys, which is respecting the process. Moreover, when we drop the shame and judgment and we challenge our fears we are free to own our limitations and our associated wants and needs in relation to what we are going through as the chronically ill. This then gives us freedom to vocalize our wants and needs (and in so doing, progress towards their fulfillment). We are freed to maintain a sense of worth that is inherent to WHO we are (as merely being alive and human) not HOW we are; and this solid sense of self serves as a stabilizing force, keeping us strong and courageous in the face of ongoing challenges as well; as we co-create with our illness a narrative of a hero’s journey. We can start to see that fighting our experience by resisting it, actually perpetuates our suffering and pushes us further away from honoring our story as the courageous survivors we all are. When we accept and respect our illness story, we are also ready to esteem it.

Uninterrupted, the ineffective coping patterns we’ve identified here impair our ability to recognize the strength expressed through our illness journeys; as they truly are stories of humility, resilience, bravery, hope, growth and even glory.

I also tend to think of chronic illness as this magnifying glass on the human condition that makes common thematic questions about our human lives unignorable. We face questions about limitations and freedom and power; questions about meaning and purpose; questions about facing grief and loss with grace and dignity; and cultivating hope and healing by maintaining a learning-orientation towards life. As we work to honor our illness stories, an important invitation comes in asking us, if we see what the great humanistic psychologist Rollo May taught: some of our deepest growth and learning comes from being placed in a dilemma that can never be fully resolved. I have learned broadly and deeply due to my illness.  I esteem my illness for teaching me about priorities, about the preciousness of every moment in time. I see my illness journey as this opportunity to answer a critical and fundamental question, that comes from my body and my life (and perhaps yours too), which is this:

“Will you love me without condition?”

In the beginning of my own illness journey, I was caught in my anger and resistance in response to having a higher symptom moment of discomfort and distress. I had been practicing mindfulness and decided to engage in a mindful exercise as a personal intervention. I began to listen to my body in the moment and, in effect, to listen to my illness story. And I had a very transformative moment when I dropped the anger, the judgment, the shame and blame; and when I accepted fear and losses as nothing personal, but as inherent parts of life and living, my anger melted into a catharsis of gentle tears that began flowing down my face. These were tears of gratitude. I was grateful for my body, for I now knew how it could go. My defenses prior to this point blocked my capacity to see an important truth: that my body is working as hard as it can, just as I am, in the face of these difficult illnesses.

So I esteemed my body for its work. I esteem it to this day. It still doesn’t cooperate the way that I want it to. Symptoms exacerbate, go back into remission, exacerbate again; and some symptoms have been permanent; yet in accessing this space, it softens the experience – it makes it more livable and provides clarity to my perceptions. When I meet my illness journey with curiosity, openness and a gentleness and kindness I can see what Matthew Sanford (a man who became paraplegic as a child and lost his family in a car accident which caused his disability) is saying when he said, “My body does not heal as well as it used to when I was 13. That’s true. My physical body doesn’t do it. But because of the compassion I can feel for my body, for others, something else is healing.”

Timothy Weymann, LCSW, shared this message at the 2024 Awareness Event.