The Frustration of Being Unable to Put a Name to My Chronic Pain

I had eagerly logged into my online patient portal to check for results of the MRI from a few days prior. I wanted so badly to find results which would lead to the name of my health problems. My heart sank when I saw the conclusion: nothing. Once again, on yet another test, I was a perfectly healthy individual, and yet, I know I am not a perfectly healthy individual.

I have dealt with chronic pain in various forms for several years now with a sudden escalation in the recent months. Where I had only had migraines and tension in my shoulders, I now have muscle weakness, chronic fatigue, hip and knee pain, difficulty walking, sensations like pins and needles up and down my arms and legs and more. I used to go on walks for an hour at a time, and at my worst, I could barely walk 100 feet. I have had blood work done, CAT scans, X-rays and recently the MRI that all show up as simply normal.


The frustration and feeling of helplessness to not know how to help myself came back with the latest results. I had gone into my MRI desperately hoping my journey to find an name would be at an end, but my expectations had been too high. Now I am not sure what step will even be taken next. More blood work? Spinal taps? I was fortunate enough to find a medication that helped with the pain and other symptoms after receiving countless medications which had no effect. However that medication is only a band-aid, not a solution.

I want to be able to put a name on my illness. A label to research online. A reason to tell others for my new physical limitations. A way for loved ones to understand me. Having a name for my condition doesn’t change anything about my physical state, but there is comfort in knowing what is happening to your body. Barely in my 20s, I struggle to come to terms with my new life after such a sharp decline in my health. Not knowing why my youthful body had betrayed me takes a huge toll on my emotional and mental health.

I am in pain every day. The pain shifts and the intensity varies, but from the time I wake up to the time my head hits the pillow my body aches. I have gotten used to always having a certain amount of pain and discomfort and honestly struggle to remember what it is like to not be in pain. My days have shifted from doing what I want, to doing everything I can before my body gives out. I try to count my small victories and applaud myself for doing little things that seem easy to everyone else.

I know I am not alone in my pain and frustration of not having a name for the day-to-day struggles I face. I try to remind myself that an answer will come eventually, and that I will be taken care of by my loved ones until then. According to Confucius, “It does not matter how slowly you go so long as you do not stop.” It may take years to find the name of the condition that has altered my life, but until then, I will hobble, sometimes literally, along, doing the best I can.

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

Find this story helpful? Share it with someone you care about.

Related to Chronic Pain

compression socks

14 Things That Helped Me Improve My Chronic Pain

I had a period of time not long ago when pain dominated every aspect of my life. I had days when I could barely walk. To go from sitting to standing I had to have help and support otherwise I couldn’t get up. My family always had to be around to help me and make [...]
blue watercolor image of a woman

Why I'm Afraid to Talk About My Chronic Pain

I don’t “look disabled.” Most of the time. Unless the weather’s gone wild (and I live in New England, so that’s only an afternoon away) or I’ve somehow injured myself, I usually look like a healthy woman. Heck, I don’t even look my age – no one believes me when I tell them I’m over 30. While [...]

I Am Chronically Ill, but You Stayed

I remember hearing, “You’re a faker,” so many times over the years. I remember hearing it from friends, family and even doctors. One doctor in particular, a pain specialist, chewed me out over the phone. He said, “It’s people like you who take pain pills and then drive! You probably don’t even need them!” I [...]
disability symbol in parking space

Why I Dislike the Disability Symbol

Life isn’t easy for anyone. Even those who are millionaires who seem to have “everything” have issues with who they can trust, what future goals they should have, how popular they are and whether they can manage their lack of privacy. Those with influence worry about losing it. In fact, having lots of “stuff” leaves [...]