I don’t want you to understand.
If you would have asked me this time last year if I understood what it was like to live with chronic pain, I would have likely said something like, “Well, not really, but I can empathize.”
No, last year version of Jenn, you can’t.
For 303 days, I have had a headache. I have not had a migraine (there is a difference, a big difference). My headache has never once radiated, moved, or varied. It has literally been in the exact same spot for 303 grueling days.
Let’s get this out of the way: Yes, I’ve tried essential oils, I’ve tried massage therapy, I’ve tried chiropractic care, I’ve tried medical and natural remedies for days. So, please don’t try to sell me on your “perfect cure”. My headache is not a migraine. It is a form of nerve damage/nerve death.
This headache has led to 5 horrific inpatient hospital days, 5 emergency room visits, 4 (and counting) outpatient infusions, 3 Botox treatments, 10 trigger point injections, countless prescriptions, specialists, and second, third, forth, etc…opinions.
But that’s not what I’m writing about today. Today, what I’m writing about is how I hope you NEVER truly understand what it means for me to have a chronic headache condition, or more generally, that I hope you never truly understand how devastating chronic illness is.
My condition isn’t life threatening. I’m not undergoing treatments that could possibly kill me in an effort to save my life. I’m grateful for that. I do not have an aneurism or a tumor (that I know of anyway). Nothing about my condition is visible from looking at me. But I guarantee you, if you’ve seen me in the last 303 days, you’ve seen me in pain, likely excruciating pain.
Well, then why haven’t you said something to me, Jenn? (I mean, if we’re close, I have because I’m real like that). But even if you’re my bestest friend, I don’t tell you every day how much pain I’m in. I don’t share with you how I have no idea how I’m going to accomplish what has to be done. I’m not going to tell you that the reason I’m falling behind in my class is because I can’t stand to read 290832078 pages because it hurts too much.
I don’t want to burden you with the pain I’m burdened with.
I truly don’t want you to understand what my life is like. I don’t want you to know the heartbreak that comes from hearing your child say, “No, I can’t do that my momma’s head hurts” when she’s invited to do something before she even asks me. I don’t want you to understand the look of disappointment that registers on someone’s face when you cancel plans with them, again, because you simply just can’t. I don’t want you to know the disappointment of knowing that you’ve sacrificed and worked hard for the last two years towards a career you’re realizing you may not ever get to do.
I don’t want you to know these things, because I see the look on your face when I mention my headache- again. I hear the tone of your voice when I mention a new treatment or how bad it is today and you have no idea what to say. I don’t want you to know what to say because if you knew what to say, it’d mean that you were living with a chronic condition too, and I don’t wish that for you.
What I do want you to know is that me canceling plans on you, is not personal, it literally means that I just can’t. I want you to know that when we’re in a deep conversation and I look away and start digging through my purse, it’s not because I don’t care or don’t want to listen, it’s because I’m looking for medication, or an ice pack, or something to bring pause to the headache flair I’m having because I don’t want to have to turn around and leave.
I want you to know that when I’m not offering to be there for you during a moment of need, or happiness, or just pure let’s do this, it’s not because I don’t want to. I WANT TO. It’s because I just can’t.
I want you to know that I hate the person my headaches have turned me into just as much as you do, and that I, more than any of you, wish the “pre-headache” version of me was back too.