I’m a healthy-looking person with a chronic health problem. It sprung up as a result of some very traumatic and stressful years in overseas ministry. I’m trying really hard to help my body right itself, but I have a condition that is generally considered by Western medicine to be incurable. This is distressing, mostly grueling.
One or two days each month, I am struck with debilitating pain for as long as 20 hours, rendering me to groan on the floor, cry, and sometimes vomit from the pain. Afterward, I have 3-5 days where I am completely exhausted, sore, and unable to leave the house for very long. It can take 10 days before my energy restores itself. The chronic fatigue lasts for 15 days on some cycles.
One week out of every month I’m nervous about making plans or appointments because I am so tired; I’m embarrassed to cancel them. Often, I have plans that I can’t cancel on a pain day. I’m anxious the whole time because I don’t know when the pain will hit. I desperately hope it’s not while I’m driving or in a meeting.
In a season of job searching, I hope my cycle starts a day early so the pain day won’t fall on the day I have an interview. I am terrified that I WILL get the job I want so badly, knowing that it probably won’t be too long into that job before I need to use a sick day.
I volunteer for a program one afternoon a week, but every fourth week I need to cancel because it seems lately that the pain days always fall on a Thursday. I hate making those calls, writing those emails, canceling plans, being sick again. It’s embarrassing. It makes me feel flakey. It makes me want to chuck something at the wall.
Friends get engaged and I make plans for their wedding. The first thing I do is try to calculate the week out and hope I will not be in pain for their event. I fear I may be in pain while on a plane and I will be left curled in a ball crying and groaning with pain that is commonly classified as worse than that of childbirth.
Each month, I take almost a week off of running, then spend a week getting back up to my normal mileage and stamina. I enjoy it for approximately 9 days. Then, the pain and fatigue come and knock me back down and out again.
I finally get my groove back, start dreaming and making plans, then face plant again. Life feels impossible. Then, it starts to feel possible. Next, I am on the floor because my body betrays me again.
For almost 3 years my partner sits with me, watches me cry and writhe and moan while no medicine helps. It kills him to sit there unable to help. It kills me to have him suffer with me again, seeing how much my being in pain cuts him in very deep places. It breaks my heart. It is not fair to him.
Doctors don’t believe me. A medical professional discounts my pain. I leave the doctors’ office and sob in the car. I give up, bring my husband with me to all of my appointments. Only then do they listen. Only then do they take my pain seriously. Only then do they order the tests I’ve asked for because I’ve had to do hours of research on my own about what is happening in my body. A midwife struggles with my pain, laughs, and offers me a hysterectomy at 29 years old.
I’ve spent so much money on doctor visits and tests. I’ve lost plenty of income, vocation, and so much identity.
Friends and acquaintances prayed for my healing for years. I’m honest when asked how I’m doing. I say, “About the same. There are good days and bad days.”
Sometimes I lie a little bit and say, “I feel better. A bit better,” because I am so tired of feeling like a drag, dramatic, and a disappointment to people. I’m doing everything I can, everything I’m supposed to, and it’s still not making me better.
I hope with the right medicine, treatments, and appointments with a trauma therapist my body’s stress response will normalize, my PTSD will get better, and my brain will make new neural pathways. I hope I will finally be able to know I am safe again. I hope the stress hormones will stop pumping constantly and my that body will be able to right itself.
There are days of faith when I trust my body will heal. I believe I’ll be able to feel energized again, confident I haven’t wrecked my capacity. I may have the energy for an adventure. I have days of hope when I believe restoration is possible, I believe I’ll have the energy and opportunity to do the work I care deeply about again.
There are gut-wrenching days when I’m unsure if I will ever recover. There are days I feel fearful and sad that this will affect my work and career, our finances and our family, and all the choices we make about our life going forward.
Sometimes, at night, these frustrations overflow into tears spilled on my pillow. Sometimes the fear smacks me awake and I quietly practice my breathing exercises, trying to calm the pounding inside my chest. I try to ease the heavy weight off that settles on when I’m feeling terrified that I am broken and cannot be fixed. (And worst of all, that it might be all my fault.)
All of it is exhausting.
Every 28 days it breaks me, it renders me to groans and tears, sometimes writhing on the floor. But every 29th day I get up, I dust myself off, I get back to it and believe healing may come. It might not, but I have to believe it will, that it can.
And if it doesn’t, at the very least, there is grace enough for what comes next.
- The Hope & Fear Cycle of Chronic Illness - July 24, 2018