A RAW ACCOUNT OF CHRONIC ILLNESS

It’s after midnight, I can’t sleep, the house is dark and my family is asleep. I find that this happens a lot, it’s usually pain that keeps me from falling asleep even with the supposed “drowsy” side effects of medications I take before bed plus a nice dose of melatonin. So I’ve decided to type the thoughts that pass through my mind on nights like these.

I’ve been mourning the loss of my old self for a long time now. I’ve been mourning her for so long that, to be honest, I don’t remember who she was. I think I remember her as a peppy leader who couldn’t wait to conquer the world. I don’t know if I’ve idealized this younger, innocent me, or maybe I’ve exaggerated my potential. I may not remember how I used to be before I got sick, but I sure miss that girl.

It’s been years now, and I’ve accepted that my life will never go back to the way it was, however I mourn the loss of “what could’ve been” every morning when I wake up and I’m greeted by pain. Not to be dramatic, but I’m never even fully conscious and the first sensation I have of the new day is pain. Every day since I was 15. I’m 24 now. So that’s roughly 3,285 mornings of my life (give or take some) that have required an extra kick in the you know what to get out of bed. That’s a lot of mornings. And that’s a LOT of mornings getting out on the wrong side of the bed. I’m not a grumpy person either. So that’s a lot of wasted energy on not only getting out of bed, but also giving the thumbs up and pretending that I didn’t almost write the day off as a complete loss.

I mourn the loss of any sense of certainty. Living life day-to-day is stressful. Am I going to be able to function today? Let’s roll the migraine dice. Some days I accomplish everything on my list: making it to class (and staying for all of my classes for the day), doing homework, and sometimes babysitting. Let me tell you right now, that TINY list, repeated and completed 4 days in a row will have me on the couch all weekend. Most times I can’t make it through my week without compromising somewhere on my list of responsibilities.

(This picture is the last one I could find on my facebook pre-migraine, c.2010? Check out those bangs and sick shades! Lol)

If anyone knows me from before I got sick, saying that I compromise my responsibilities is probably shocking. I went from being involved in everything and having huge, lofty goals, to accepting the bare minimum as passing with flying colors. I’ve learned that my head can force me to bail out of anything at any given time. I can muster up the courage to fight the pain for so long before something on my agenda has to give. I’ve been called irresponsible, flakey, unreliable—I guess in a way it’s true. I can’t always give people the answers they need, so why would they feel like they can depend on me?

I’ve had to mourn the loss of friendships. I’ve gotten really good at cancelling on people. Even if it’s plans that I’ve been looking forward to for a long time, I’ve perfected the, “My head is killing me, I wish I could go but there’s no way I’d make it or be any fun [insert sad face emoji]. Have fun without me!” text. It’s heartbreaking. When you’re in school, you’ll get the “We missed you at lunch today! Feel better” text from your friends for a few days and then the message stops coming. Watching friends leave you behind because you can’t come out anymore is hard. I’ve learned to let go of any grudge because I can’t be upset. I’m really just jealous that my friends have their freedom and don’t have their lives controlled by misfiring neurotransmitters or whatever is happening in my brain.

When I was younger, I’d cry a lot. I think that was my “denial” phase. I couldn’t believe that missing classes and staying home alone on weekdays while everyone else’s lives went on was becoming my reality. I also got angry. Another stage of grief. I believe that when you have a chronic illness you truly do mourn a loss and you really do pass through the stages of grief. My poor dad experienced the denial phase for a long time. Here was his 15 year-old daughter facing this handicapping illness and there was nothing he could do to make her better. No doctor, medicine or treatment worked and it made him mad. I felt so guilty that I caused him that much stress.

The emotional baggage that comes with chronic pain is almost as life changing as the physical pain itself. When I tell people that I have daily chronic migraine, their first thought is, “poor girl, her head hurts 24/7, I couldn’t imagine” which is a sincere and legitimate reaction. They’re trying to understand and I really appreciate it. But the effects run so much deeper than that. Myself and millions of other people with chronic illness are mourning the loss of so much more than their easy, pain-free days. And it’s a feeling that cycles though our thoughts every day. I could drone on about this because I’ve had a lot of practice accruing material, but I wanted to share a little bit beyond the initial thoughts when someone mentions “chronic illness”. I usually end my posts with something encouraging, but in the nature of transparency, I’ll just be honest.

CC