My Life with Ehlers Danlos: Handling Medical Anxiety

By Tiffany Early

Good grief. What a crazy few weeks. I feel like I’ve been teetering on the edge of crying or screaming for days, and I’m afraid this feeling will hit its peak at the least opportune of times. (Because who among us has ever had a meltdown at a convenient time?) My health has changed this summer. I can’t even put my finger on all the changes exactly. I’m weaker, clumsier, and in more pain than before. I’m still trying to figure out if this is my “new normal” or if it’s just another long and frustrating flare. At this point, I have no clue.

My neurologist recently ordered imaging to try to understand the source of my new headaches (which are adding a little extra “oomph” to my previously existing headaches). My neuro e-mailed me back a week later to say that she didn’t know the source of my headaches, but the imaging had revealed a cerebral aneurysm that would need to be watched.

Wait, what?

Did I seriously just get an e-mail telling me I have an aneurysm somewhere in my head? This doesn’t feel like news you should send via e-mail. My e-mail is typically reserved for pizza coupons or sending recipes to my mom- not vague news of an aneurysm. This began a two-week stint of over-the-top medical anxiety. I had roughly a thousand questions. My doctor went out of town before she had a chance to answer them. For two weeks I carried my phone with me around the clock in case my doctor returned my calls. I carried my phone to the bathroom; I set it beside me when I ate meals or went to church. I wasn’t going to miss that call.

My mood during those two weeks can best be described by saying I watched a lot of Toddlers and Tiaras. (Personally, I’ve never binged watched TaT when I was in a good place mentally.) I was scared. I was maybe even slightly terrified. Every headache was a rupturing aneurysm in my anxious mind. However, I couldn’t live in fear forever. There was a dog that needed walking, a husband that needed reassurance, and dinners that needed to be cooked. It wasn’t the time to sink low into the valley of despair- especially when I didn’t know exactly what I was dealing with. Here’s how I managed to cope.

I took inventory of my body. When my health anxiety was high, every twinge of head pain seemed ER worthy- even if it was from the most obvious causes (ie. nail polish fumes). I had to stop (sometimes multiple times in a day) and think about my body. I would remind myself that I was capable of walking my dog that morning. I cooked dinner the night before. I blogged. I even argued my point decently while debating politics with my husband. My body still worked. Yes, I was scared, and that fear was understandable. However, I wasn’t actually dead, and I couldn’t give up on a body that hadn’t completely failed me yet.

I was very honest. There were times that I called my husband and said, “I’m freaking out right now.” My brain would start moving too fast into the world of “What if,” and I couldn’t slow it down. When I lost myself in the mire of fear, I would ask for what I needed. Aside from my husband, I haven’t been overly forthcoming with details about my newest health scare (It seemed silly to worry everyone about something that I didn’t have clear answers regarding.). However, I told my friends in online group that I needed some support, and they provided it. I didn’t have to give details I wasn’t ready to share in order to receive the encouragement I craved.

I pushed for better communication. I couldn’t sit around idly and wait for my doctor’s office to return my call. (To be fair, I had no idea she had gone out of town and couldn’t answer my questions.) I refrained from calling every hour, and I’ll be honest, that took effort. I did, however, send e-mails via patient portal and leave a couple messages for the nurse. I understand that offices are busy. I try not to be overly needy. However, I felt I had a legitimate medical concern that deserved consideration. I was going to continue advocating for more and better communication until I received it.

Also, as a person with rare disease, changes to my health evoke new questions that doctors don’t necessarily have to ask with the “typical” patient. For example, this aneurysm makes me wonder if my form of Ehlers Danlos Syndrome has a vascular component. Up until this point, my doctors have been convinced that mostly my joints (and a few extra floppy organ systems) were affected. In the messages I left for my doctor, I would ask the nurse or receptionist to please ask my doctor to take my EDS diagnosis into account as we move forward.

I developed clear questions. In the time it took for me to hear back from my doctor’s office, I was able to get my thoughts together. I knew exactly what I wanted to know, and I knew which questions required an answer for my personal peace of mind. In the two awful weeks of waiting for information, I went from “I need to know everything there is to know about this” to “I need to know x, y, and z in order to make an informed decision regarding my next steps.” While I still wish I had been given answers more quickly, the time that transpired allowed me to prioritize the information I really needed.

Medical anxiety is unavoidable in the world of rare disease and chronic illness. It can be slightly alleviated at times by advocating for yourself and becoming as informed as possible about your condition. (Although, I caution you to take the things you read via Google with a LARGE grain of salt.) Currently, (after finally talking to my doctor) I am going through a six month wait to see what my aneurysm does. It’s hopefully too small to rupture, so we’re spending time in “wait and see” land to see if it grows significantly. I’m not going to lie; it still makes me a little nauseous to think about it.

If you’re neck deep in the waters of medical anxiety, you’re not alone. It happens to the best of us. You aren’t being a pessimist; you’re going through a very real and frightening ordeal. Reach out for support; advocate for yourself. Also, take heart in knowing there is always hope.

What are your best practices for handling medical anxiety?