living with long-term illness

I don’t think I have mentioned this much before, but I have an autoimmune disease and hypocholesterolemia (meaning my body doesn’t produce enough cholesterol) and a bunch of other diagnoses. And some days it’s hard to know how to respond and to stay strong mentally. I am sharing this not because I want an outlet to complain, but because I want others to understand the confusion and frustration and discouragement.

Imagine this for a second. It’s 6:30 pm. You have pain right below your stomach that’s worse than the normal everyday pain. You have already taken the maximum medicine for the day. You’re also totally exhausted from walking to classes and barely keeping up with note-taking in classes. You want to lay down and curl yourself up into a ball under your blankets and listen to some music. But you are also in college and have a short paper and 150 pages of reading and two quizzes the next day. What do you do? Do you sleep for a few hours and wake up at midnight to finish your work, knowing you won’t get much sleep between finishing work and having classes? Or do you try to finish everything first and then sleep? Or do you finish everything except the reading and ask a friend for a synopsis? Or maybe you skip studying for the quizzes too and hope to do ok without studying? My point is, how do you decide whether to try to feel better or to do really well in school? And sometimes, I don’t make the right decision. I had to get an extension for a paper once. I’ve skipped reading before. I’ve failed quizzes that I could’ve aced with a little studying.

And, as someone with anxiety, when my pain levels increase, I freak out. I list off things that could be wrong. Once I calm myself down, I can think through things to identify the which organ(s) are located in the area that hurts and think through things logically. Slowly, the time required to calm down is decreasing. But it is a slow process.

It’s really easy to get discouraged. For example, my abdominal pain will get progressively better for a period of time. Then, all of a sudden, it’s back – sometimes worse than before. And while some progress is consistent, a lot of it is not. It’s easy to start complaining. It’s easy to get angry at God. It’s easy to want to give up. And for me, this is my hard thing. I think everyone has that hard thing in their life. This is mine. While the anxiety and the panic attacks are bad, if I could change only one thing, I would choose medical healing, not psychological healing.

Through it all, I am trying to remind myself that God is still up there, watching over me, protecting me. I am reminding myself of the many, many blessings I do have – antibody levels decreasing, energy levels are a little better, less unexplained muscle pain. While it feels like repeated piercing of fiery knives 24/7/365, I am trying to be thankful for the days that are a little better. When I want to complain, I remind myself of days that have been worse. I remind myself that Jesus never left and never will, and that He is right there with me in the pain. I remind myself that if I finish strong, one day I will be in a place with no more pain and no more tears. And in that beautiful promise, I can rejoice.

And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away. – Revelation 21:4

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