The Mighty Logo

Why I Find Comfort in Diagnosing and Labeling My Conditions

The most helpful emails in health
Browse our free newsletters

There is something that can be very hateful about labels. The stigma that comes with them is not always helpful and can sometimes box someone into a corner. Not everyone wants or even needs a label. Often I think that people should just be allowed to be different and quirky without being put into a category.

But sometimes, and for some people, a label is important – it helps us to cope. Knowing there is a reason for your symptoms – whether they are emotional, physical or both – can help you to make sense of what is happening to you. It can help you to select the right treatment plans and to understand and guide yourself on the hard days. Knowing what you are up against can help to keep you strong. It is often half the battle to put a name to the creature that is attacking you.

For example, being diagnosed with PTSD was such a comfort to me. That probably sounds so incredibly silly – who wants to have post-traumatic stress disorder? No one! But the diagnosis made sense of all these complicated emotions and even physical symptoms I’d been experiencing for years. Being told I had severe anxiety was also a relief. I knew I had depression. I knew it was bad and I knew I was struggling with suicidal ideation, but I did not know I had anxiety. Another label, another name… It didn’t cure me but it did give me the knowledge to understand why I felt like I did. Learning I had PTSD and anxiety disorders helped me to cope with the distress they caused – distress I never understood before.

Being diagnosed with occipital neuralgia was another comfort. It made sense of the intensity of pain my headaches were causing. The same with finding out I had adenomyosis after my hysterectomy, and previously having confirmation of endometriosis and polycystic ovarian syndrome after exploratory surgery. These are horrible, painful conditions that no one would ever want to have, but when you have been dealing with pain for years with no confirmed diagnosis, you start to question your sanity. No name for your ailments makes you wonder if you are imagining them. No test results labeling what is wrong makes you worry you are broken beyond repair. Not having answers can be soul-destroying.

18 months ago my doctor suggested that I may benefit from seeing a rheumatologist; she suspected I may be diagnosed with fibromyalgia, possibly chronic fatigue. It took nearly a year for my appointment to come around, and by the time it arrived we were not in a position to pay the $400 for the first consult, so I cancelled my appointment and never got a diagnosis confirmed or rejected.

Last night I was laying in bed at 3:00 a.m., unable to sleep. Every joint was aching – my ankles, knees, hips, elbows and wrists were the worst. There was no position that felt comfortable – even laying flat on my back, immobile, was painful. My skin felt raw and inflamed, as though every nerve ending was on fire. The smoothness of the sheet felt like sandpaper, the heaviness of the blanket hurt. My forearms and shins felt as though they were burning. The irritation was almost unbearable.

In the quiet of the night I can hear my breathing; it sounds labored, strained. I try to release my painful body by tightening my muscles then relaxing them while focusing on calm and deep breathing, but instead my anxiety starts to build more and more. Frustration. Fear. Tension. I question what is wrong with me. And why? Does it have a name? How long will it last? Is it temporary or is it going to last for the rest of my life? The constant exhaustion. The incessant aching. The night sweats. The feeling of raw nerves and tender joints. The hypersensitivity to pain. (Stub a toe? Possibly faint!)

My mind is crying out, “Help me. Diagnose me. I need answers,” and it sounds ridiculous, but right now being given a label would help. While my GP’s suspicions should be enough for me, without a confirmed diagnosis from a specialist I can’t help but keep worrying.

A label or a diagnosis would not heal me, but it would help because then I could say to my mind on these nights, “Shhhh, it’s OK, it is just a bad day. You’ll be OK again soon – you just have to get through it.”

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via megaflopp.

Originally published: March 24, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home