I just read a quote that really resonated with me.
“Pain is inevitable, suffering is optional.”
After some searching, it appears to be attributed to Haruki Murakami. It got me thinking about my current state of health and Elizabeth Kubler-Ross’ stages of grief which were based on her work with terminally ill patients. I know this isn’t an original blog post, but after I realized the other day how wild a ride – both physically and psychologically – the last year has been, I had to write it.
I realized this as I was painting my toenails and thinking about the last pedicure I got. It was just about year ago. I was still in Boston. I’d been trying to make plans with a close friend for a while and, of course, my migraines pre-empted a few dates. When we finally met up one Sunday for pedicures, I described to her how hard it had been keeping up with work full time. I had FMLA, but was considering, at my doctor’s recommendation, short-term disability leave.
Within six weeks of that pedicure date, I was taking leave and I never got back to working full time. For the past six months I haven’t worked at all.
(*Side note, pedicures are not a good idea for someone who has migraine and is scent sensitive! Lesson learned.)
My point is that the past year has not been anything like I would have imagined and as I think back, I now see I was going through my own stages of grief. No, my illness is not terminal, but it is chronic and there is no cure. It’s also considered as debilitating as dementia, quadriplegia and active psychosis.1 I’m not the first to recognize this, but it helped me finally come to the realization that because there is no cure, I have to accept my current life and learn to live it as best I can. That’s really hard. Not only is there grief in being ill, but illness has resulted in a whole host of losses that I have to come to terms with, from my job, to friends, to my independence. It’s this double layer of grief that’s so challenging.
A while back, I had a therapist who tried an approach called acceptance and commitment therapy (ACT). We didn’t get very far with it, so I won’t profess to understand the theory and I will admit to finding it hard to want to follow at the time. Mind you, this was eight months ago. Thinking of the stages of grief, I was only likely at anger and it felt like she was asking me to consider skipping straight to acceptance. I see the benefit now, but I wasn’t ready then. I guess I needed to work through some stuff first.
Anyway, as I understood the idea of ACT, those of us with chronic conditions have one level of suffering: our illness. However, to try and fight against it, deny it, or be angry about it just adds a second level of suffering that is unnecessary. I understood that, but I didn’t know how to not “fight” my disease. How do you not fight to get rid of a thing that is all encompassing and ever present, and ultimately, the root of the suffering to begin with? It would feel like giving in and maybe giving up too soon. What if I gave up and the next treatment worked? But that’s the fine line. You don’t necessarily give up trying to get healthy. I guess you just give up the fight against being sick. It’s a really, really fine line.
This is how I journeyed through the stages.
For me, it wasn’t so much denial. I would define that as knowing something, but ignoring it forcefully. Instead, I didn’t really notice warning signs. I knew my headaches were becoming more frequent, but I didn’t know there was such a thing as chronic migraine – daily, unrelenting pain, nausea, and other symptoms and side effects. Even if I had known, I think I was so stuck in my anxiety that I wouldn’t have recognized that my headaches were turning into chronic migraine. I certainly had no idea that this would be a chronic pain condition that would be so very, very difficult to undo.
Around a year after my headaches began worsening I stopped having any pain-free days. That was probably when I realized migraine was changing my life dramatically. It was summer, but I couldn’t enjoy it. I only made it to our friends’ cabin for one quick overnight marred by a doozy migraine. I didn’t get in my kayak once. I had just finished my PhD program and hated that I was missing out on summer fun.
By fall, I had to take short-term leave from work. I was having week-long flares that I couldn’t tame. My mother was having to drive down to Boston to help me catch up on normal chores as well as make sure I could eat. I got angry at this point. Unfortunately and unfairly, I often took it out on people trying to help me. I still struggle with this. I have lost my career, my ability to be spontaneous, I’ve lost weight and my hair, I can’t eat what I want, go to a movie, or even go out with friends without triggering a migraine. Anger seems inevitable.
I do a lot of bargaining in my head. Some might say I’m doing it with a higher power, but I just make a lot of deals with the universe. For example: “If this new medication works, but it makes my hair fall out, that’s fine. I’ll live with being bald, but otherwise healthy.” The truth is, nothing has helped and I’m still losing my hair, not sleeping, having muscle twitches, and a host of other side effects. Apparently, my bargains aren’t good enough. And I really don’t want to have to make these kinds of bargains.
Like anger, how do you not go through depression when you have a chronic illness that steals so much away from you? My depression is tied very closely to my pain levels. In a bad flare, a bad week, a bad month, my mood will suffer. In those rare, brief respites from migraine, my mood will lift, but the anxiety is always present. I go to counseling and I’ve tried medications. There really shouldn’t be any shame or stigma in needing either one. Happiness and sadness aren’t always choices. Sometimes it is biological.
I still struggle with what it means to accept my illness, but also want desperately to get better. I know I’m only in the earliest stages of acceptance. I’m no longer in denial (i.e., ignorance), but between stops at acceptance, I also revisit the other stages.
Keeping in mind that I haven’t mastered acceptance and that pain is my most pervasive symptom, my new motto is:
This is my pain today. I will do what I can to diminish it.
If I can’t, I will live my day as well as possible.
Some light reading, then some nerdy journal abstracts:
As I mentioned, coming to accept migraine as part of life for a person with the chronic form of the disease is not an original concept. Others have written about it, too. It is even something being studied as a sort of coping mechanism for living better with chronic migraine.
Edit (10/9/17): https://migraineagain.com/coping-with-chronic-illness/
Note: I talk about my headaches a lot in this post because that was how my migraine disease shifted from episodic to chronic, poorly controlled daily headaches that were more and more often becoming full-blown migraines. Now, I talk about having migraine. One symptom of my migraine disease is headache. I just wanted to make it clear why I chose the wording I did in this piece.
1Shapiro RE & Goadsby PJ (2007). The long drought: the dearth of public funding for headache research. Cephalalgia. 27(9):991-4.