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What It Was Like to Be Undiagnosed for Most of My Life

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I am generally a positive person. Considering the fact that I’ve lived most of my life with an undiagnosed illness, I think that’s pretty good. When I was young, it was “growing pains.” As I got older, it was “all in my head.” So, I learned to live with it. I taught myself how to shut the pain and sickness behind a wall and keep going. I learned to focus on the good and push away the bad.

That sounds amazing right? Imagine feeling pain and sick every day, but telling yourself it’s all in your head. Imagine not telling anyone for years how bad it hurts because you don’t want to be seen as a whiner or a hypochondriac. Imagine when you finally trust someone enough to share, having your feelings immediately minimized and discounted. Most people who have an undiagnosed chronic illness, or in many cases even a diagnosed one, find this to be a way of life because we don’t know anything else.

As I got older, I believed this pain was normal and I was just being a baby. It was important to keep my pain and illnesses to myself because I had been told all my life I was overreacting. I would get antibiotics from the feed store or friends so I wouldn’t have to go in and see the looks I was used to getting. It wasn’t until I injured my foot, and after two years of pain, that I finally went to the doctor. It was there I was told that I had broken it in three places. I had treated it like just a bruise for two years. Then, I began to see a glimmer of how strong I really was. When he asked me why I didn’t get treatment, I told him it didn’t hurt as bad as the other pains I had. But still, they were skeptical about my “phantom” pain.

More years went by, including a major infection of my gallbladder that I ignored until the pain was too much. It was immediate surgery, because it was ready to burst when I finally sought help. Year after year of respiratory illnesses, strep throat, ear infections, and viral infections. More pain with “no cause.” For a couple years I reached the point where I could hardly get around. A change to my diet and dropping weight helped me get back on my feet, but still the pain and ill feelings persisted. People would be amazed I could push as hard as I could in the gym or recover so quickly from broken bones and surgery. I still told them it didn’t hurt much compared to what I lived with every day. Still, they had no grasp of the true level of pain and sickness I endured.

This was when I realized it was not all in my head, and began to search for answers. You have this… no wait, this… no wait, maybe this. It went on for years to the point I was ready to give up. Then my sister, who also had trouble most of her life finally got a real answer: it was genetic. My regular PCP ran some tests and the numbers, then gave us the answer. My immunoglobulin numbers were quite low.

You can spend years wanting answers. However, when you get them, no matter how prepared you are, there is a time of grief and anger. A time when you realize the answer you got was not the one you wanted. A life sentence is never good news, no matter how much relief you feel to finally find out it was not “all in your head.”

My PCP sent me to an immunologist. He also approached me with the same skepticism as others had in the past. This time though, I had answers. He had to have his nurse google my illness before he could even run any tests. Having a life-long illness is bad enough, but when it’s rare and the very people who are suppose to be trained to help you have to google it, you realize how messed up it really is. Welcome to having a rare illness in the deep South.

I realize that all of my symptoms can not be explained by this one diagnosis, but at least I’m headed in the right direction. There will be more diagnoses, more feelings of losing control, more medications, more people who discount my illness or preach at me to “be positive.” There will be treatments that make me sick. There will be those who don’t believe me or tell me I’m exaggerating. There will be more of a lot of things I don’t want to deal with.

Do you know what? That’s OK. My journey is mine and no one else’s. For those people who can’t deal, it will make room for all the new wonderful people who will come into my life in the future. I am a positive person, but I don’t have to be positive all the time. It’s OK to be overwhelmed, or depressed, or cry, or scream. It’s healthy to let your feelings out and rage at the universe for how unfair it is.

There will always be days when it’s just too much. But there will also be days when the world won’t seem so dark, days when the smell of the flowers overpowers the smell of the medications. There will be days full of hugs, and the song of birds, and days where the sun is warm and the breeze is comforting. There will be days to smile, laugh, and play.

It is those days that will make it worth it on the not-so-good days. I believe the universe is about balance, and life is about seeing and honoring that balance.

Originally published: April 20, 2018
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