10 Things I Wish I Knew When I Was Diagnosed With Fibromyalgia as a Teen


When I was first diagnosed with fibromyalgia and myalgic encephalomyelitis (ME) at age 13, and I don’t think I fully understood just how much of an impact it would have on my life as I grew up.

Thinking back now, there is so much I would love to go back and tell my teenage self, so here are 10 things I wish I knew when I was first diagnosed.

1. People are ignorant.

I had a really hard time with people, mostly teachers, in school treating me disrespectfully because I was ill. I wish I knew that just because some individuals are ignorant about my differences, I should have never felt as if I was a burden. I wasn’t.

2. It will get worse.

Yes, as much as you hope it won’t, it will probably get worse. For me, dealing with the pain getting worse was difficult because I was given so much false hope from the pediatricians. The amount of times I was told “It will get better” or “It will most likely just fade away” is unbelievable. I clung to so much hope that after a year I would be back to normal and I would be able to do everything I used to with no trouble at all. So, 13-year-old me, I’m sorry, but you’re not going to get better. But I promise it will become more manageable and you will be able to cope.

3It’s OK to say no.

Getting sick while becoming a teenager was a hard transition. It was when all my school friends where going out and having sleepovers and learning about how cool it was to be a teenager and be able to do your own thing. I pushed myself too far on so many occasions, not wanting to be left out. If I was feeling really bad but a friend called and asked if I wanted to go out shopping or have a slumber party, I would never say no. I always felt I was obligated to say yes because I had to be social or no one would want to be my friend. I know deep down, 80 percent of the time I wanted to say no and I should have said no. I wish I knew back then it was OK. Which bring me right on to the next point.

4. You will lose friends over it (but the people you lose aren’t true friends anyway).

I lost so many people who I thought were my friends because of the effects of my illnesses. Once I got to the point of completely not being able to go out or go to school, I think I was left with three friends. I found it so hard to get up and get on with my life when I was losing people I thought cared about me due to something I had absolutely no control over. It wasn’t until a couple of years ago that I realized the people I thought where my friends, didn’t care about me at all, and the people who stuck by me through it all, are still with me now.

5. Some doctors won’t believe you. 

It is a rare, but it happens. I have had to deal with my fair share of health professionals who think I’m lying or just don’t believe in fibro at all. I had to be so persistent with doctors, but the persistence pays off.

6. It’s not the end of the world. 

I found my illnesses so hard dealing with sometimes, and I will admit there were times I would go to sleep wishing I wouldn’t wake up. Sometimes I just couldn’t see a light at the end of the tunnel. I wish I knew that it wasn’t all I had to look forward to and it wasn’t the end of the world.

7. It’s trial and error.

Having to try so many different medications, treatments and therapy is a long, tedious process that doesn’t always work. It’s trial and error at its finest. Sometimes you find something that works for a month or so, and some things do nothing at all. You just have to keep trying.

8. You will make friends with people who understand. 

This is something I have only come to know recently, but I would love to have known this when I was younger. There are so many amazing people out there who know what it’s like to be deal with a life that isn’t quite normal, and I love getting to know so many different people in our not-so-little spoonie community.

9. You will have good days and bad days.

I think if I knew back then I would have some really good days and some really bad days, I would have learned to pace myself correctly a lot earlier than I did. I’ll admit I still don’t pace myself quite as well as I should, but I do it a lot better now compared to when I was younger. I also wish I knew that even though pacing plays a huge part in how many bad days I have, I can’t actually control my body, no matter how hard I try. Coming to terms with that was quite a big deal.

10. You are a badass, and you can get through it.

This is by far the most important thing for me. As simple as it is, I needed to know from the day of diagnosis that even though I will have to jump a lot of hurdles and work my way through some painstakingly difficult situations, I can do it and I can still have a life that isn’t ruled by my illnesses.

Now, nearly seven years later, I’m doing just fine. As much as I would have loved to have known all these different things when I was younger I think (as cliché as it may be) having to battle my way through all of the issues made me the person I am and made me a damn strong person at that.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


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


Related to Fibromyalgia

To Those Who Wonder Why I Don't Talk About My Illnesses

“What’s it like?” “Why do you need a walking stick?” “What’s wrong with you?” These questions get asked every single day. Whether it be employers, friends or complete strangers in the street. Everyone wants to know. Everyone wants to know why the 22-year-old who, if he weren’t hunched over his walking cane, would seem perfectly [...]

The Pain of Realizing I'm Not Healthy Enough to Have Kids

I have had depression and anxiety since I was a child. At 19 years of age, when I was a sophomore in college, I got fibromyalgia, with which I was diagnosed at age 24. In my 20s, I started having serious stomach pain issues as well. Those went undiagnosed for several years until I was [...]

3 Awkward Times Strangers Judged Me as a Young Person With Invisible Illness

This describes my life. Between developing rheumatic fever when I was 12 (and the subsequent lasting heart damage) and the onset of fibromyalgia symptoms four years ago, my medical notes are pretty hefty. I laugh about being able to accurately pick out my notes by a mile from the waiting room of my annual cardiology [...]

When I Let Go of My Old Life Before Fibromyalgia

There are two exhibitions coming up that I really want to see. Both of them are in London museums, and are easily reachable by public transport. The logistics of planning such an innocuous day out should be straightforward, but it’s currently more akin to planning an overseas trip for 10 people who barely know each other. [...]