4 Things To Do While Waiting on a Diagnosis

This is a guest post by Kelley O’Brien

For years, I was trapped in an anxiety-inducing cycle of believing I was going to die. I had more than a dozen unexplained symptoms that left me exhausted just crawling out of bed in the morning. I was lethargic all day, in pain and dizzy. By bedtime, my body hurt so much I’d often cry myself to sleep.

As bad as the pain and exhaustion were, it didn’t compare to living with the knowledge that I, along with my doctors, didn’t know what was wrong with me. I was expected to attend classes, write papers, work, socialize, and everything else a normal college student does, with the knowledge that everything in my life was now beyond my control.

My fears weren’t something I talked about with anyone. It was too much to think about let alone say aloud and have someone ridicule my fears. Or worse, agree with them.

I knew the majority of my thoughts were simply my anxiety and depression getting the better of me. It was hard work figuring out how to reduce the fears that accompanied being undiagnosed. My persistence with my doctors eventually resulted in a referral to a cardiologist that put me on the path to diagnosis.

My initial diagnosis proved to be inaccurate, but lead to another referral to one of the best neurologists in the field. I was finally given the right tests to diagnose me with postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome (CFS), and peripheral neuropathy. Based on my bloodwork, my doctor believes I also have an autoimmune disease and we’re currently in the process of figuring out which one it is and if it’s the cause of my joint pain.

I haven’t reached the end of my diagnosis journey, but I’m getting there, and I’d like to share a few things I’ve learned along the way:

1. Find a way to keep your stress and anxiety under control. This is arguably the most important tip I have. Stress and anxiety, especially when you’re already sick, are only going to make you feel worse. In some cases, it’ll actually make you physically worse, potentially causing conditions such as diabetes, heart disease, blood pressure and a slew of other symptoms. That’s why finding ways to destress is so important.
There are many ways to relax. Some people write in a journal, some color in adult coloring books, and some people like to curl up with a pet and binge HGTV and Food Network. I like to make jewelry when my hands aren’t hurting too much or read a good crime novel. It doesn’t really matter what you do as long as it’s keeping you from worrying about upcoming test results or having to see another new doctor. Talking to a therapist and considering antidepressants or anti-anxiety meds are also viable options that can make a major difference.

2.Make a health binder and keep track of your symptoms. A health binder will make it easier for both you and your doctor to have all your pertinent health information together. Get copies of appointments and test results and keep them all in your binder. As for tracking your symptoms, you can put some loose-leaf paper in your binder and track them there, or get a separate journal, or even write them in your daily planner. There are also apps that allow you to plug in your symptoms and then send to your doctor. Do whatever works best for you and your lifestyle. Having a symptom list can make a huge difference in diagnosis. It allows you to find patterns, and doctors might even be able to diagnose sooner. I didn’t make a binder or track symptoms at first, but noticed a huge improvement in my own understanding of my health once I started to.

3.Don’t be afraid to rely on the people in your life for support. I had, and still sometimes have, trouble letting people help me. I was always fiercely independent before I got sick and viewed getting help as a loss of independence. But this wasn’t the case at all. Letting people help me, whether it be preparing me food when I felt bad or driving me somewhere, allowed me to be more independent. I had more strength than I would have if I continued to be stubborn. Being able to rely on people also helped my mental health. I could vent about what I was feeling and didn’t have to carry all the weight of being sick and undiagnosed all by myself.

4. Use the internet. I don’t mean lurking on WebMD and worrying yourself into a frenzy. Instead, utilize online support groups for chronic illness. Don’t be afraid that you don’t have a diagnosis yet because everyone was in that position at one point or another. Facebook is full of groups to join and Tumblr has a strong chronic illness community to talk to. There are also chronic illness threads on Reddit, videos by sick YouTubers, and endless articles to read. The Internet made me feel a lot less alone in my illness and I made a lot friends that understood me. Pinterest is also something I use to keep track of information about my illnesses, gentle exercises that won’t tire me out too much, and self-care tips.

Being sick and not knowing what’s wrong is an incredibly scary time in a sick person’s life. Chronic illness is a long and exhausting road, but there is plenty you can do to ease the confusion and fear. Finding ways to relax, getting organized, relying on friends and family, and finding support groups and other important things on the Internet can help make a real difference in your life.

What helpful strategies have you used while waiting for a diagnosis? Share them in the comments below.

Kelley O’Brien is a chronically ill writer living in Ohio. She enjoys making jewelry and watching tv with her girlfriend. Kelley is a community leader for Dysautonomia Support Network. You can find her on Twitter @killjoy_kelley and on Instagram as @kelley_ob