If you read my introduction post last week, you know that my fibromyalgia diagnosis is relatively recent. While I’ve been symptomatic for about a year now, I had no clue what those symptoms were from. It wasn’t until I spoke with a rheumatologist and ruled out other conditions that we landed on a fibromyalgia diagnosis. And even though I had a hunch it was coming (I do my research haha), I still wasn’t sure what to do with it. I know I can’t be alone in feeling this way, so I wanted to share not only my experiences being diagnosed, but also what has helped me work through the diagnosis.
My New Fibromyalgia Diagnosis
As I said before, I was recently diagnosed with fibromyalgia, so my experience with working through the diagnosis is still pretty fresh. And honestly, I’m still processing and figuring out this life will fibromyalgia, but that’s for a different blog post!
I had honestly been expecting my fibromyalgia diagnosis, based on input for other doctors and my own research (but please don’t self-diagnose!). But prior to the diagnosis, I didn’t really know what was going on with my body. I knew I was in pain and I knew it seemed like nothing would help. I was so tired of not having an answer for why I was experiencing these symptoms and I was frustrated. So the fibromyalgia diagnosis initially came as a bit of a relief. I finally had an answer, a reason for my symptoms.
I still feel that relief. I can finally answer people’s questions a little more honestly and directly about why I do or don’t do something. No, those of us with fibromyalgia or other chronic illnesses don’t owe an explanation to anyone, but having a diagnosis definitely can make things a little more comfortable when those questions do arise. I also now know that I can take action to feel better. Thanks to my fibromyalgia diagnosis, I was able to get on medication that has helped make my symptoms much less debilitating. I’ve been able to target my lifestyle changes, supplements (FibroAid being a huge part of that), and a lot of my personal choices to better suite my needs and make my fibromyalgia more manageable. And it’s pretty incredible to feel some semblance of control over what is happening with your body. Even if it’s not as much control as any of us would like.
One thing I have noticed about having a fibromyalgia diagnosis is the way some people react after you tell them you have fibromyalgia. First thing I usually get is “oh my gosh I’m so sorry” or some variation of an apology. Most people have heard of fibromylgia and have heard how painful it can be, so they feel bad. And while it’s very kind for them to be concerned, it can get a little uncomfortable when they apologize for an ailment none of us really have any control over. Another response I often get when people find out that I have fibro is “but you’re only 24!” or some other comment on my age. I think the general population often perceives chronic illnesses to be an affliction exclusively of the elderly. And that’s simply not true, as many of use know. So that can be a little uncomfortable, too.
When you’re diagnosed with something like fibromyalgia, you learn things about yourself you may have never known. And some parts of you may even changed. Another thing that might happen is you may lose some people, but you’ll probably gain some friends, too. Some people in my social circles lost interest in spending time with me when I got sick because I didn’t go out and party much. But those who were truly my friends stuck by my side, made an effort to learn about my condition and my new limits, and showed how much they cared. I’ve also met some incredible people in the chronic illness community that have been a great part of my support system while navigating this diagnosis.
What Can Help with Your New Diagnosis
I want to summarize what I’ve learned over the last few months, and throughout my journey with chronic illness so far. My goal with this is to provide some guidelines to anyone newly diagnosed or struggling with their condition. I know even just getting a fibromyalgia diagnosis can be difficult, and then dealing with it can be that much harder. But don’t give up. Even with fibromyalgia, you can live a life you love, pursue your dreams, and be truly happy. But if you’re not there yet, if you’re still working through that diagnosis, here are my tips for you:
- Find your support system. My support system has been the reason I’ve been able to work through my fibromyalgia diagnosis as well as I’ve been able to. This can be family, friends, even people you meet online. Just make sure you have someone to talk to, someone who is there for you and wants what’s best for you. You don’t have to, and shouldn’t, go through this alone.
- Do your research. Be careful with this one. I know sometimes I go a little too far down the black hole of information on fibromyalgia and it can make it seem like you’ll never feel okay again. So please don’t do that to yourself. What I mean by “Do your research” is look into ways to be your own advocate and help yourself lead the best possible life you can. Whether it’s looking up medications, lifestyle changes, supplements, or anything else, do your research to see what you can do for yourself when it comes to fibro management.
- Be kind to yourself. This diagnosis isn’t your fault. Fibromyalgia isn’t anyone’s fault and your limitations as a result are not your fault. I know it can be hard to give yourself grace when you feel like your body is fighting you, but please be kind to yourself. One of the best things you can do is love yourself through all of this. It makes everything much easier and makes life that much better.
- Don’t push yourself too much. For me, this meant taking some time away from school to get my health to a functional level. For you this may mean learning to say no to obligations,, not pushing your workouts so far, or getting rid of toxic relationships. Your limits may have changed as a result of your fibromyalgia, so be conscious of yours and try not to push yourself them.
- Do things that bring you joy. Even if you’re having a bad flare day and can’t leave your bed, try to do a little something that makes you happy. And on the good days, it’s okay to embrace the minimal symptoms and do things you enjoy, even if you weren’t able to take care of responsibilities on other days. Having fibro shouldn’t mean living without doing things you love. Take the time to care for yourself, including your mental and emotional health. And that means try to do things that make you happy.