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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 ‚ÄúIt will get better‚ÄĚ or ‚ÄúIt will most likely just fade away‚ÄĚ 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.

3.¬†It’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 clich√© 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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