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

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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.

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Originally published: April 29, 2016
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