There are a lot of things to get used to when you’re diagnosed with a chronic illness. Even before you officially know what’s wrong, managing symptoms can be an endless source of frustration. In some ways, getting a diagnosis does make things better. But once you have one, you have to adjust your lifestyle and your expectations to fit it. Getting diagnosed relieves a huge burden, but it also comes with a whole new host of challenges. So if you’re new to your chronic illness, don’t feel overwhelmed: it’s just another learning curve, and you can tackle it. The following are tips that I developed for myself to help me learn how to manage my fibromyalgia. Every illness is different, and every person is different, but if you’re struggling, they might help you too.
1. Understand that your fibromyalgia diagnosis doesn’t solve everything.
While you’re experiencing mystery symptoms and being tested for a million different things, it can feel like if you can just get diagnosed, everything will be better. That’s how I felt for a long time, but once I heard the word “fibromyalgia,” it wasn’t a new era of enlightenment, it was a new challenge. Don’t get me wrong: understanding the problem is a huge part of solving it. But getting diagnosed is kind of like the moment someone struggling with addiction chooses to go to rehab. It’s the first day of the rest of their life, but they’re also going to face new struggles in their attempt to get sober. They’ll come out the other side of it stronger, but the beginning isn’t going to be easy. It sounds defeatist at first, but going into your new diagnosis with this attitude will make it easier when the challenges arise.
2. Temper your expectations.
Not forever, but at least at first. One of the toughest things to get used to is the idea that you can’t do everything you used to be able to. In some cases, those things will come back. In other cases, they won’t. No matter what your situation is, you need to cut yourself some slack in the beginning. Understand that it’s OK if you don’t feel like the person you were before the fibromyalgia diagnosis, or if you aren’t meeting your own high standards. Chronic illness is a curveball. I started having severe symptoms when I was a rising senior in college, with a great job and a prestigious internship. I had to give up my job, and my graduation wound up being delayed by two years. It took me a long time to stop being hard on myself about that. I realize now that although I would have liked to graduate on time, that just wasn’t in the cards for me. That doesn’t make me lazy or weak. It was just a thing I had to deal with. Be kind to yourself. You’re already having a hard enough time; don’t make it worse by adding pressure or unrealistic expectations.
3. Do research on fibromyalgia, but not too much.
When you’re newly diagnosed, the Internet is like a siren, filled with more information than you could possibly process on your condition. While it’s good to do research, and I don’t recommend sticking your head in the sand and not learning anything, don’t overwhelm yourself. Do the research on topics that matter to you, whether those are treatment options, doctors, support groups, or something else. Don’t get bogged down in the plethora of material available. An obscure study from the 90s or a random blogger from Minnesota’s opinions aren’t going to help you, and they’re not going to make you feel more confident about your health. Keep your research focused on the things that are important to you.
4. Everyone has an opinion. Only listen to the ones that matter.
I can’t state this enough. When you tell people you have a chronic illness, the weirdos will come out of the woodwork. Some people will doubt that your condition is real, and will suggest that you’re probably allergic to gluten. Others will tell you going vegan will fix all your problems, or tell you to eat a sprig of lavender under the full moon while chanting to the god Saturn. Don’t be afraid to set people who doubt the veracity of your condition straight, but when it comes to the weirdos, remember that they’re just trying to help. Nod and smile, and understand that in their own hippie way, they want you to get better. Just don’t try anything that involves consuming strange plant materials. And remember that, no matter what other people think, no one knows your body better than you do. As long as you’re making informed decisions about your treatment, you’re doing the right thing.
5. Understand that your fibromyalgia is part of who you are.
Like it or not, your fibromyalgia is a part of your bio now. You don’t have to lead every conversation with it, but know that it’s part of you. I’m not advocating pigeonholing or labeling yourself, and you don’t have to be the pied piper of chronic illness, but get used to the idea of having a chronic condition. It will only make things worse if you try to deny it, either to yourself or other people. That being said…
6. Know that your condition doesn’t define you.
You’re not just a sick person. You’re not just a disabled person. You’re a person with a chronic illness, or a person with a disability. I understand how you can feel like fibromyalgia is wiping away who you are, and your only choices are either to live in denial that you have it or embrace the label completely. Don’t give it that power. You have your illness, but you are not your illness. Try and do the things you did before you were diagnosed, or before you started showing symptoms. One thing that I’ve always loved is reading, and I’ve been trying to do more of it as a way to remind myself of the person I am apart from my fibromyalgia. I also try and stay active as much as possible, because that’s always been a part of me too. Even if you have to make a list of the things that remind you of who you are apart from your illness and read it daily, do it. Reminding yourself of your own agency and your own personality outside of being sick will make the hard days a little easier.