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10 Things I Wish I Knew Before My Fibromyalgia Diagnosis

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Fibromyalgia, for me, is a very annoying and confusing illness. It’s really hard to explain it to people that don’t understand it — especially when I don’t fully understand it myself. Here are some things I wish I knew before receiving my diagnosis:

  1. This illness will make you feel even more anxious than you already are. When you have brain fog and stumble over your words or lose your train of thought, you will worry that people won’t take you seriously.
    Your sleep will become very out of whack. You will have difficulty sleeping at night and will need to nap during the day. You will often wake up feeling like you’ve been hit by a truck.
    3. Your motivation will fluctuate — a lot. You may not be able to do everything that you want to get done, and you will feel guilty about this.
    4. You will learn a lot about pain, both physical and emotional. You will get aches and pains in random places and will not find an effective remedy.
    5. You will learn the importance of self-care. You will find that you need to pay extra attention to your energy level and feelings, and to honor both with what they need.
    6. You will learn that being in tune with your body is actually beneficial. As someone with a history of an eating disorder, you have not been in touch with your body and what it needed. Now it’s time to learn that.
    7. On the same note, you will become empowered by exercising. You know that it will relieve pain and make you feel strong, and that it’s not about weight-loss.
    8. You will learn the importance of self-advocacy. When doctors dismiss you because there’s no physical evidence of an illness, you will not give up. Even if they don’t dismiss you, they will not be able to figure out what is wrong.
    9. Fibro will come alongside other illnesses. You will be bogged down with another set of random undiagnosed symptoms that, again, make no sense to doctors. You will realize that fibromyalgia can coexist with other illnesses, and you will feel extremely frustrated.
    10. You will come across people who don’t understand your illness. And you realize that this is a moment to educate them instead of getting angry.
    11. You will discover your strength as you keep pushing through every day, because you are a fighter. You will have fibromyalgia, but fibromyalgia will not have you.

So if you’re living with fibromyalgia and feeling any number of these things, you’re not alone. Keep on pushing through.

Originally published: November 22, 2019
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