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A Letter to Myself When My Chronic Pain Comes Back

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This is a letter to my future self that I hope I never have to read — because it’s for if and when I find myself back in an unbearable place. Being in this place involves unwashed pajamas, pain that makes me dry heave in the trash can, feeling frozen, and hoping that if I just don’t move, it will get better. It has me praying that I won’t feel the fire or the stabbing icepicks or the lightning sensations in my body. With every piercing pain comes disappointment.

To myself in pain,

The pain is so hard, but I’m not sure it is the hardest thing. The hardest thing for me is being alone and unsure and isolated. I have been there. I am still here, but I am not alone this time. It is unbearable to me, but self, remember you have thrived.

You not only made it through life, but you made it through with a promotion, a degree, and your most important relationships intact.

I know what it feels like to wake up in the ICU, to not remember months at a time.

I can tell from your reflection, the tell-tale slip of your mouth, and the way your eye turns downward on one side that you’re in deep pain. I know how hard it is to face the pain without knowing if it will get better or worse. Sometimes the idea of forever or even surviving just the next few hours feels too heavy.

I know the feeling of the jolt of electricity that doesn’t seem to end. I know the shame that somehow still finds its way in. I know the disappointment and all the ways you feel like you are failing — even though you aren’t.

I read a post today from someone who talked about this condition and her fear. I read that each time her illness presented new challenges, she had to reinvent herself, shift her career, and change her thought process.

So much of that is true for you too. You have done those things. You have had to shift your career, but you did it in ways that pushed you forward and made you listen because it was harder to talk. You have had to adapt and work through several layers of your own thought process. But you do not have to reinvent yourself. You are still here.

It feels backwards to say this, having a chronic illness has made me — has made you, self — healthier than ever. There were days when I couldn’t get out of bed. But I also gave up caffeine. I got enough rest. I quit drinking. I listened to my body. I said “no” more often. I did less, but everything I did meant more. I made my circle smaller but stronger. I asked for help and prayers and smoothies.

I took the medication. I went to the appointments. I asked the questions. I went to doctor after doctor until I found one who listened. 

I went to church — even when I couldn’t sing along and especially when I couldn’t feel anything. I was angry and empty. I prayed anyway. I still do. And sometimes I still feel absent. But sometimes I feel the opposite.

It is easy for me to talk about hope now, but I know how dangerous that word can be. I looked up the opposite of hope, knowing already that it would be fear. You can hold both at the same time.

It is OK to be afraid of hope, and self, you are good at doing things you are afraid of, so hold on to hope anyways. The risk is big, but not as big as the risk of living without hope at all.

You have permission to feel whatever the hell you feel. You can do hard things, but this is a different kind of hard thing.

Doctors and websites often do a good job of describing the physical pain, but this time you won’t be surprised by the emotional pain. They both have to be addressed and listened to. They even make pills for both.

I feel so much better. Some days, I forget how hard it was. But I can remember. It feels like someone is kicking my skull in — so realistic that I think I will feel hollowed out when I bring my hand to my head. It’s missing out. Staying in bed. Feeling like a burden, inept, in the way. 

It’s everyone’s face when my fork falls in the middle of dinner, clanging on the plates. 

Tears slipping down my face in front of my first period class.

Pulling over on the side of the road and waiting it out when the pain moves to my eyes, and I know I can not see enough to drive.

It’s watching soccer games from my car or not at all and feeling like such a “bad” mom for not being on the sideline like all the other parents.

It’s not washing my face or wearing makeup or eating solid food for long stretches.

I could go on, but instead, here are some things I want you to remember.

Even when you felt like this — like it wouldn’t end or ever get better, you went to work most days and gave your students your words, even when it hurt. You made dinner and did laundry and occasionally even worked out. You completed the hardest parts of your education and survived the busiest seasons of your life. You drove to practice and piano lessons and even occasionally out to meet friends. You started to write for yourself instead of other people. You did the mental work that you have been avoiding all your life.

You dug in. You got up in the middle of the night and signed your kids’ homework folders. You accepted help. You asked for help. You paid for help. You even managed to help others.

You still set goals and read books and drink decaf. You are still a wife and mother and friend. You are still a good wife and a good mother and a good friend. You are still strong. You are still brave. Especially now.

I want you to remember these things:

Don’t wait to ramp up the meds. Call your doctor. Buy a new pair of super soft pajamas and some fuzzy socks too. Take a day off sooner rather than later. Find a good neurosurgeon. Make all the soups. Skip family obligations if you aren’t feeling well. Tell the people you trust, and be honest with yourself and with them.

You can hate this experience with every ounce of your being and still be proud of who it has made you. You have already come through the other side once. Maybe you will again.

Either way, I know how you feel. I have been there and I still am because I am you. Now take your medicine and get into bed — you need it, and that’s OK.

Getty image by MangoStar_Studio.

Originally published: March 15, 2022
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