Why I’m So Open About My Fibromyalgia

I want to get personal with you guys today for a few reasons. First off, if you’re reading this blog, you’re looking for information. Or someone to relate to. Or for some hope. Because Fibromyalgia sucks and the journey can be incredibly trying. I also want to be personal with you because I want to make sure you know where I’m coming from with these blog posts. I want to make sure you trust me, because this community means the absolute world to me, and none of my words mean anything unless you get to know me and trust me.

So here we go!

Why I'm So Open About My Fibromyalgia

It All Started with Interstitial Cystitis

I want to preface this post a bit, as I usually do, by saying that being open about my illness is simply what works for me. I’m not saying it’s the right way to live life with fibromyalgia, and it certainly isn’t the only way. However, this openness has been the right choice for me, and I want to share with you exactly why that is.

I’ve always been the type to wear my heart on my sleeve. I was taught at a young age that communication is important, and that speaking my mind is not a bad thing (usually haha). I grew up in an environment where I was able to figure things out for myself, while still having the love and support of my family. My thoughts and feelings were (rarely) downplayed and I always felt like they were valid. So when I first started experiencing my Interstitial Cystitis symptoms at 16 years old, I was pretty quick to discuss it with my parents. While I was initially embarrassed by these bladder issues, and was uncomfortable talking about them, my family helped me feel a more comfortable talking about it, even if it was just with them.

I haven’t always been super comfortable sharing my illnesses, though. Especially since I developed Interstitial Cystitis as a teenager, and life is hard enough when you’re 16. I was embarrassed. I was frustrated. Why did something have to be wrong with me? Why couldn’t I just be healthy and normal? Why I'm So Open About My Fibromyalgia

Then, I went to college. And I started to stress about it even more. What if my professor asks me why I’m always running to the bathroom? What if that cute guy at the party sees me heading to the restroom for the fifth time this hour? But luckily, even then, I still had people I could trust to talk to. My friends, roommates, and family were all incredibly understanding and supportive. Even if they’d never experienced anything like it, they tried their darned best to be there for me, and for that, I am forever grateful.

Because of my support system, I slowly gained the confidence to embrace my illness and not worry about other people finding out. I got to the point with my Interstitial Cystitis where it was just easier to tell people that I have “health problems” or “bladder issues” before they ever had the chance to ask “you have to go to the bathroom again?” It was less stressful to provide the warning, so that I could relax and not worry about someone’s reaction if my symptoms hit. Which, in turn, eased my symptoms a bit.

Thanks to all of these experiences, all of the anxiety, grief, and relief I felt with my Interstitial Cystitis, I was better equipped to handle life with Fibromyalgia.

Why I’m So Open About My Fibromyalgia

So that’s a little background, a little more info on how I became so open with my illnesses. I went through the shame, the frustration, and the dread. I went through it all. But with the right support system, I was able to gain the confidence and acceptance to talk about my illnesses. However, that’s not why I talk about them.

Why I'm So Open About My Fibromyalgia

I talk about my Fibromyalgia and my Interstitial Cystitis because it’s my coping mechanism. It’s how I handle my day-to-day. I’m not exactly running up to everyone saying “Hi! I have Fibromyalgia!”. But if someone is involved in my day-to-day, is relatively close to me, or even just reads my blog, they know I have these illnesses. That’s because Fibromyalgia and Interstitial Cystitis affect me every single day. They’ve both changed my lifestyle immensely and shaped who I am at this moment. How could I not talk about things that play such a big role in my life, even if it’s one I don’t necessarily love?

Another reason I am open about my illnesses is because I know others can’t be. I know there are people who don’t have the support system of family and friends that I do. I know there are people who work in places where they can’t even hint about being sick without fear of consequences. And I know there are people who just aren’t comfortable with it. The thing is, I’m going to continue being open about my illnesses, my experiences, and my chronic illness journey because I want those feeling hopeless or alone to know there are others out there like them.

A year ago, I had just started medical leave from graduate school, I was depressed, and I was essentially bedridden. Today, I’ve graduated with my Master’s, I’m working full time, and my symptoms are under control. Had you asked me last November if I would ever get to this point in my life, I would honestly have told you I didn’t think I would. I was hopeless. And I felt utterly alone, even with a good support system.

Why I'm So Open About My Fibromyalgia

Then, I decided to start writing. And my illnesses became a part of my blog, just like they were and are a part of my life. I got the right diagnosis and medical help I needed. I even found FibroAid! What I’m trying to say is, you can be in an incredibly dark place, but life does get better.

And that’s why I’m so open about my fibromyalgia. I want to make sure everyone knows that this is some people’s’ reality. But I also want to make sure those of you living that reality know that there is still happiness to be found and hope to be had. And if you’ve been wanting to start being more open about your illness(es), but have been afraid to, let this be your sign to slowly start sharing. And if you don’t want to be open about your illnesses, know that if you ever need anyone, this community will always have your back.

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