You have fibromyalgia. How can I help?
How sweet do those few words sound? Wouldn’t it be amazing if everyone we met would recognize that we have a lifelong debilitating condition, and would realize that we need help?
There is nothing shameful about having fibromyalgia. However, more often than not, we are targeted by people who do not understand fibromyalgia.
We are the butt of jokes, snark, doubt and shame. it is our mission here at thefibrowarriors.com to educate Fibro Warriors and their immediate circle.
With this in mind, here are a few things that could drastically change your life.
1- Don’t hate – Educate
It is hard to have a condition that is so grossly misunderstood. None of us chose to have fibromyalgia.
We were forced to recognize the signs and symptoms of our condition. Chances are, before we were diagnosed, we knew very little about fibromyalgia and everything it entails.
So why is it that we expect other people who do not have fibromyalgia to know exactly what is going on with us?
I know it sounds like I am shifting the blame on to the Fibro Warriors. And I kinda am.
After all, if we, ourselves, did not know what to expect, how can we honestly believe that the people around us will know exactly what is going on?
Unless your family consists of doctors and health professionals, it is not fair for us to wait for people to ask us what is going on or offer help.
When you are first diagnosed with fibromyalgia, the amount of resources and information available can be overwhelming. It is a normal to feel you are drowning in information and pain.
It will get better.
In the meantime, share with the people you care about, and who care about, what you know and what you need help understanding.
If they truly matter to you, and you to them, they will educate themselves gladly.
2- Vade retro, morologus
Did I just tell you to stay away from morons in Latin? Why yes, yes I did.
I will concede that this one is a lot easier said than done. Unfortunately, the negativity in our lives sometimes comes from the people we are supposed to trust the most, and who are supposed to understand us the best.
Not long ago, a Fibro Warrior mustered the courage to share her story with us (Letie’s Story).
She told us how her aunt and her cousin knew so little about fibromyalgia that they thought they could catch Fibro by simply sitting next to a Fibro Warrior!
Many of you were shocked to read this, and at the same time many of you knew exactly the type of ignorant comment she was being subjected to.
I guess the point I’m trying to make is that we should try to educate people. However, if they are not receptive, then there’s really no reason for you to stay around those people.
But let me be clear: staying away from negative people does not mean that you have to cut all ties with your family or friends.
It will take some practice, but you will learn to recognize who can help and who cannot help.
Once you have that down, it is entirely up to you whether you want to hang out with them or not.
It may be that you only see them when your Fibro Flares are under control, or that you get some extra rest before family functions so you can handle them better.
3- Lala Lala Lala – I can’t hear you
Oh hi there, contradiction! It’s been a while!
Ok, so I pretty much just told you to suck it up and ignore the negativity. Except that I am human, and I know that there are some instances where you have no choice.
What if the negative people are your own family or your coworkers? What if you have to interact with these negative Nellies every single day of your life?
You need to be able to compartmentalize your life. In other words, you need to create a bubble around you that will protect you from the harsh comments.
I guess you could say you need to have thick skin to stay mentally healthy.
People uneducated regarding fibromyalgia are everywhere. I mean, literally: everywhere.
So rude comments, inconsiderate comments, stupid comments: you will never escape them. But you can ignore them. Just smile and chuckle with them. Who cares?
You’re better than them! It’s very likely a good portion of them have zero clue how serious fibromyalgia is. They were not told about it.
They may even still think it is some sort of made-up catch-all diagnosis.
You wouldn’t scold a kindergartner for not knowing how to read. I mean, you would understand that the kid hasn’t learned yet. That’s why you send kids to school: to educate them.
Next time someone hurts you with their words or attitude, imagine them sucking their thumb, holding on their teddy bear. It won’t block the stupid coming out them, but at least you’ll have a funny visual!
4- Help! I need somebody! But just not anybody!
You were supposed to sing that title. It’s a Beatles song. And it’s awesome. Here is an excerpt:
Help me if you can, I’m feeling down
And I do appreciate you being ’round
Help me get my feet back on the ground
Won’t you please, please help me?
How perfectly does that for how Fibro Warriors feel everyday? It’s like we push people away, but at the same time we want them right here with us.
With fibromyalgia often comes mental health adjustments. It’s not easy to think that this is how we are going to feel for the rest of our lives. Dang. That really sucks when you think about it.
It hovers somewhere between depression and grief. For having lost our hopes and dreams the way we had planned them, we grieve.
For having everyday pain and discomfort and mental anguish, we are depressed. All of this is normal. Not fun, that’s for sure, but normal.
We need to communicate with our circle that depression is not something you just snap out of.
Yes, I make plans and then cancel. Yes, I get super excited about a weekend at the lake, and then sleep the whole time. Yes, I suggested that road trip, and then kept silent the entire way.
I’m not doing these things on purpose. I’m not trying to be “that person.” Trust me, I don’t want to be “that person.” But some days, I am. And as annoying as it is for you, it hurts me physically to have to do it.
Fibro Warriors, do not be embarrassed for not being able to do things. Do not be ashamed to cancel plans.
And do not stop reminding people in your circle that you love them and you need them.
A human being can only take so much rejection before giving up. Tell your friends that. Tell them you don’t want them to give up, but today is no a good day.
You will see who your real friends are. Your true friends are the ones who will never stop trying to include you.
And these people are worthy of staying in your circle.
It is not easy to battle a life-long chronic illness, and it is even harder when you have to deal with a pocket full of side effects and a platter of comorbidities.
You don’t have to do it alone. Ask for help. Accept help! And remember that if all else fails, at least you still have us!
Fellow Fibro Warriors, how do you deal with every day negativity? Do you have a trick to let people know you need help? Is it hard for you to ask for help? Let us know in the comments.
And as always, you can email me at [email protected] . I would love to hear from you, and share your story with our community!
Until later, keep up the good fight, Warriors!