When Most of Your Time With Chronic Illness Is Spent Waiting

I have heard before that when some people find out a person living with invisible illness does not work, or works less than others, they think, “Oh, how lucky!” If you have ever thought this, or if you wonder what it is we do with all our time, here is the answer: We wait. It’s true that we go to a lot of doctor’s appointments and make a lot of phone calls (to doctor’s offices and insurance companies mostly), and that can take up a lot of our time. Most of the time, though, we spend waiting.

There is no Princeton-Plainsboro Teaching Hospital from the TV show “House” in the real world. You can’t just check into a hospital for a week and have Dr. House and his team fix you, or at least solve the puzzle that is your complex and multi-faceted illness. Medical care in the real world is disjointed. This becomes especially apparent if you have more than one chronic illness, like I do. I have approximately 20 different doctors and therapists and they don’t communicate all that well.

You’re probably thinking, “Twenty? That seems outrageous! That has to be exaggeration!” Let me assure you it’s not. I have a primary care doctor, three neurologists, a gastroenterologist, a pain specialist/anesthesiologist, a psychiatrist, a pain psychologist, an allergist/immunologist, a doctor of integrated/functional medicine, two rheumatologists, two physical therapists, an ob-gyn, a neuro-ophthalmologist, a geneticist, a genetic counselor and an ear, nose and throat doctor. In the past I have also seen dermatologists, and in the near future I may need a cardiologist.

I realize that HIPPA can create barriers, but I’ve signed a billion and six waivers**. They still rely a lot on me to carry information between them. I realize my doctors are busy people, and likely overworked. I am not naive about that. I just wish there was a solution. I wish I didn’t have to be my own caseworker. Yesterday I made 24 phone calls to doctors offices — 24. I am still waiting for many of them to call me back. In the “between times,” between the phone calls and the appointments — I wait. I wait for the medicine to work, for the pain to subside (even just a little), for a referral to go through, for my phone to ring, for the “on hold” music to stop, for the nurse or the pharmacist to call my name, for the room to stop spinning, for someone to care.

When you live daily with symptoms that would send most people to the emergency room, you learn patience. You learn that sometimes you have to sit with the pain instead of fighting it. I can use techniques like meditation and deep breathing to calm myself, but I still can’t wrap my head around the fact that I’m doing what I can, that waiting is my job now.

There’s still something in the back of my mind that constantly urges me to fix this immediately, even though I know I can’t. The ER doesn’t “get” us — it’s not for people like us, unless there’s an abrupt change in our condition. Even then they often don’t know what to do with us, so we may stop going or try to avoid it if we can. We wait months to see specialists who may or may not understand our condition(s). We travel to different cities and states to find the people who do. We hope that while everything might not be OK right now, it will be someday. And we wait.

**This is an exaggeration.

Follow this journey on ZebraWrites.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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