5 Things I Would Like to Hear (and not Hear) About My Fibromyalgia

When I was diagnosed with fibromyalgia, my friends, family, doctors, and even complete strangers that I connected with through fibromyalgia support groups all seemed to have a piece of advice for how I should handle things. Some of them were extremely helpful and I applied them to my life. Others? Not so much, though I understand that they were given with best intentions rather than maliciousness.

Sometimes, when face to face with an illness like fibromyalgia, people want to be helpful, but just don’t know what to say! The list may vary from person to person, but here’s what I would like to hear (and not like to hear) about my fibromyalgia in 2018.

Here are the five things I’d like to hear:

1. “Do you need to vent?”

Yes! I do!

The problem is that I don’t tend to, unless it’s in a fibromyalgia support group. There’s only so many times that people can hear “I feel like shit” before they get uninterested. I want to vent about how much pain I’m in, how I can’t stand the brain fog, how I stumble over words, how my limbs just don’t want to work anymore, how I wish I could have my old life back, etc. It helps! And it helps to have an ear to vent to when journaling gets too boring.

2. “Is there anything that I can do to help? Can I help you with XYZ?”

I like the second question a bit more than the first. The first, to me, is too broad. I know there’s a lot of things that I need help with now and I’m not always sure how “helpful” someone wants to be and how much responsibility they want to take on. If you have something specific in mind, let me know! If you want to know a few things, let me know! I’m grateful for any help that I can get.

3. “I don’t know a lot about fibromyalgia – can you tell me more about it?”

Not a lot of people know what this thing is, or they have a pretty skewed understanding of what it is (doctors included, unfortunately). If you want to learn more about what this condition is, just ask me. I’m happy to educate as much as I’m able to.

4. “It’s OK.”

It’s not OK, but hearing that it is helps to make it a little less not OK each day. I’m not sure what’s going on there, whether it’s something like fake it til you make it, but there you go.

5. “I see how hard you’re fighting this.”

Validation is an incredible weapon. I personally feel like a lazy failure and a loser. Being reminded that’s not the case and that’s not how others see me means the world.

These are the top five things I’d like to not hear in 2018:

1. “Look on the bright side. Things could always be worse. Someone out there has it worse than you do.”

This entire group of questions annoys me to no end. First of all, you’re invalidating my pain. Secondly, yes, I (and everyone else) knows that there are people that are dealing with some pretty horrific things in the world. And this doesn’t mean that my fibromyalgia isn’t horrific in my world. That sounds ridiculously selfish and narcissistic, I realize that, and it took me a long time to be able to put myself first when I tend to put everyone else before me. Giving myself that attention that yes, things are really bad, allows me to give myself self-care in other times that I wouldn’t.

2. “When are you going to heal and be back to normal?”

I’ll pencil it in next Tuesday at 3:30 p.m. That work for you?

Seriously, I don’t know. I’m taking the right medications (that we know of right now), staying away from foods that cause inflammation, living under a heated blanket, sleeping and sleeping some more. I just want to get better as soon as possible, and right now, I have no idea when that will be. Trust me. It hurts me more than it hurts you.

3. “There’s always something wrong with you.”

Our lives can’t all be perfect.

Last year, 2017, was a very shitty year for me. I started it off with a back surgery which was botched, leaving me with nerve damage before I was hospitalized twice during the summer due to a mental breakdown, partially stemming from the back surgery. I was diagnosed with bipolar II, which took a lot for me to process. As I was recovering from my mental health, I started getting physically sicker and sicker until I am where I am today with the diagnosis of fibromyalgia. This isn’t to say that there were some healthier days and years. Stating that there’s always something wrong projects all or nothing thinking onto my condition, something that I don’t need at all.

4. “You were fine yesterday.”

There are days when I’m able to get out of bed and can have as close to as what a normal day would be for a person without a chronic illness and there are days where that’s just not going to happen, no matter how much mind power I’m going to put into this thing. There are good days and there are bad days. I don’t have control over what they’re going to be. If anything, I’m learning to appreciate the good days even more.

5. “Just work through it. I get tired too.”

Each day is a struggle for me. If I’ve made it out of bed and was somewhat productive, awesome! If I didn’t make it out of bed, OK. Then I need to stay down and recoup. I’ve learned to listen to my body rather than fight it every step of the way.

And, trust me, you don’t know what this fatigue is like until you’ve actually felt it. You don’t know what it’s like to sleep 16-20 hours a day and still be exhausted. You don’t know what it’s like when taking a shower leaves you wiped out for the rest of the day. You don’t know what it like to have pain that nothing touches each day, and the hell your body goes through because of it. Don’t relate it to you unless you actually know what it’s like.

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