When the "chronic" in "chronic illness" becomes real.

I was officially diagnosed with fibromyalgia about a week or so ago. I thought that the diagnosis would bring relief- I had assumed I'd had it almost since the beginning of having symptoms, and I thought a diagnosis would help me feel validated. Instead, though, I started to feel very depressed- in a low energy, low motivation, grieving sort of way.

The depression turned to anger and anxiety this morning when I woke up feeling exhausted and stiff and foggy and remembered that Monday is my longest day of work with the most clients and the least amount of breaks. When my supervisor asked me this morning how I was doing, I told him the truth and asked for help. How do I manage this exhaustion and keep this job that I love?

He brought up two things: a dialectic from Dialectical Behavior Therapy (DBT) and a story he'd heard about a president of the National Fibromyalgia and Chronic Pain Association who kicked off her presidency by hiking Death Valley and telling the world about it, and how the way she talked about and broadcasted this story could have been invalidating to so many people. (I haven't been able to find the story my supervisor was talking about, but the idea of this happening relates to what I'm going to write about so I'm going to keep it in.)

In DBT, we balance the idea of validation and change, and acceptance and change. In my case, that would mean acknowledging both that I have a chronic illness, that it has changed my body, that I can't do as much as I want to AND that there are things I can do to manage it, to feel better, and that acceptance doesn't necessarily mean I have to stop doing what I love and living a life I want.

What a struggle! How do I validate what I'm feeling AND avoid long periods of unproductive moping? How do I allow myself to feel depressed and grieve AND keep moving forward? How do I practice self-care without limiting myself? How will I know if I'm accepting too much and changing too little...and vice versa?

There are two fairly common responses that I tend to get when I first tell people that I have a chronic illness: "Wow, that's really terrible and sad!" and "Don't worry; you'll be okay, you can still do anything you want! Just have a positive attitude/eat this special diet/do yoga/etc." (There are, of course, also a number of more moderate responses in between those two, and I am grateful for people who respond in these ways).

The woman who crossed Death Valley and used it as a "You can do this too" type message may have wanted simply to be an inspiration, but this event could also have fallen squarely in the second response for so many people. I would love to be able to hike (not in Death Valley though...) that far and run and dance and work long hours and take myself on a solo road trip and have a wide social life like I used to, but I'm not there right now and I don't know if I ever will be again. When I feel depressed about fibromyalgia, it's often in relation to wishing that I could do those things and instead being weighted down to the couch, too tired to even read.

So what do we do about this? How do people with chronic illnesses still live lives that they love without overdoing it? How do we know how far to push ourselves?

How do we balance this acceptance, validation, and change?

Building Up

This is an edited version of something I hand wrote in my journal this morning:

Over the past year or two I've gradually become more aware and open to emotions that are fairly new to me: joy, contentment, happiness, self-love, compassion, wonder, and curiosity, among some other, more complex permutations of aliveness.

With this opening other new things found their way in too: memories of trauma, a PTSD diagnosis, increased sensitivity to how other people and especially animals are feeling, a more urgent blood and medical phobia, and physical pain.

No wonder humans love to numb themselves.

It seems that healing has helped me feel more alive and allowed me to start facing the things that contributed to my feeling numb in the first place. Depression and fear were walls between me and joy. They also let me hide from things I wasn't yet strong enough to face. As I've healed, I've learned to love myself, including being thrust into learning to love even the parts of myself that are excruciatingly painful.

Lately I often feel raw, naked and exposed, and I wonder why people don't run away in horror...why I don't run away in horror.

I'm in a place where I am successful, often content, proud, motivated, and purposeful. In order to get here, and to stay here, it seems I am having to recognize the parts of myself I've been ignoring. Without those parts, I can't move forward. I can't live as only part of a whole person.

It's like I was cracked open, broken, put back together quickly before anyone could gawk at the mess, and then carefully taken apart again in a safer time and place. Now I am sorting through the pieces, cleaning out the unhelpful stuff, figuring out what's Me, and working to put it back together again in a way that is beautiful and makes sense. It hurts, and at the same time, it's exciting and invigorating.

It's like cleaning out the infection I've been carrying around for decades in an old wound.

I hope this helps someone else to hear this.