5 Things I Wish I Knew When I Started Having Chronic Pain

There are a few things I wish I had known sooner in life. The majority of them relate to my mystery illness. I am in month 13 of my journey for a diagnosis, and I learn new things about my illness and how my body should be functioning every day. Many aspects of whatever this is that is plaguing me are things I have actually been dealing with for a lot of my life but never knew they were an issue – I just thought everyone had the same problems. It was only when these things really began interfering with my regular life that I began to see how extreme the issue really was, and now I do not go a day without pain.

I cannot help but feel that if I had learned somewhere about the “normal feelings” of the body, I may have started this process long ago, and I could be in some kind of management regimen rather than the mysterious diagnosis limbo I am in today. I hope someone else relates to this list and shares it so maybe someone else who is struggling with the same things that I did will be able to seek medical help sooner.

1. I wish I knew my knees weren’t supposed to hurt. It started in middle school really – my knees ached under pressure. I would run up the stairs like all of my friends and feel pain with every step. I just thought everyone felt that when they went up stairs; I never thought to mention it to anyone. What I didn’t realize is pain like that may be normal if you’re in your later decades of life – not when you’re only just beginning your second decade.

2. I wish I knew my metabolism wasn’t just “really high.” I have family members who have “really high metabolisms” so they were always hungry and always small in stature. I went through my life with people constantly commenting on how thin I was, or how much I would eat and how frequently. I even had times when I would feel faint or nauseous but didn’t realize there was actually a medical disorder behind it.

3. I wish I knew I had to push doctors for more when they would dismiss my leg pains as “growing pains.” Throughout my life, I would get severe musculoskeletal pain. When I was young it was once a week and always quite obvious, because I was hardly even 10 years old and felt pain, so I would cry and look to my mom for an answer. When we went to the doctors, they said, “It’s just growing pains… they’ll go away.” So, as I got older, I also got better at hiding my pain and continuing on with my life despite it. Then, in my later years of high school, it began to be more frequent, twice per week or so, but I always just went with what the doctors said: “It’ll go away eventually.” Then I turned 17 and realized I had been the same size since I was 14; I wasn’t growing anymore, but I figured it would all catch up eventually. Then I turned 18 and the pain kept getting worse, more painful and more frequent. And so I went to the doctor again after my pain came every day for several months and was so debilitating I could hardly move. As soon as I mentioned it, my doctor looked at me in surprise. I was almost 19 and had been the same height and weight for five years. Now I’m 19 and am in pain every day, but no one knows why.

My older brothers and I before the start of my senior year of high school (nearly 3 years ago).
Me and my older brothers before my senior year of high school.

4. I wish I knew it was OK to tell the people around me about my pain. If I had talked about my pain, I may have mentioned it to someone who had a similar experience, or someone who would have told me it wasn’t normal. If I had talked about my pain in the later years with my family, then maybe this wouldn’t have taken them by so much surprise. If I had talked about my pain, I might have a few more answers.

5. Finally, I wish I knew earlier how much other people can come to support you. I have always been independent, but since this pain has become so severe I have had to become more dependent. But it was hard at first. I would only talk about the pain or ask for things with my mom. But that was an extreme burden for both of us. I would avoid telling people about the pain so they wouldn’t “judge me.” I was terrified it would change the way people thought of me if I had to begin asking them for help. It is still difficult at times, but I have seen how willing my family and friends are to help me. I have seen how hopeful they are in my journey. I now know that I am not in this alone, and I never really was – I just thought I had to be. One of the most important things this mystery illness has taught me is how much is truly possible. It has shown me how much love is out there and how much I can still do despite my illness. I wish I had been able to begin my search for answers sooner and I wish I had adjusted to life in pain more quickly. The biggest lesson by far? Talking is vital. No one will help you if you do not ask for help. No one will look for a solution if they don’t even know there’s a problem.

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