Being Honest with Others about Having Fibro; Learning to be Open while not Bellyaching

As a veteran “Fibro”, I know how hard it can be to share with others what is is that I’m going through. It wasn’t until about two years ago that I started being vocal about my illness to my friends, family, and acquaintances. Sure, most of them knew I was tired a lot and took a ton of medications. Yes, they remembered each time I couldn’t go on a hike, a run, or camping. But not too many of them cared why, or bothered to know the name of my illness. I don’t blame them. It can be awkward being around someone with a chronic illness, especially when they “look fine.” They never knew what to say, and were uncomfortable in their own skins when I wasn’t feeling well.

Being Honest-White Sox Game
The day after this game, while family was visiting, we walked 7 miles around the city. I made it through but lost almost 2 weeks to a flare-up afterwards.

This is about 5 miles into our 7 mile day, the three of them look so happy! I look bushed.

It took me about 14 years of living with this illness to realize that I was a huge part of why that was so. I was uncomfortable about it, always worried about being seen as a complainer, a whiner, or even worse… as weak. In my mind there was no middle ground between acknowledging that I have Fibromyalgia, and being a bellyacher who brings everyone down with her complaining.  How could I expect others to be at ease, or even worse, to put me at ease, when this is how I dealt with this?

Being honest- hiking
As hard as it was, I took it slow and made it to the top of the hill!

I needed to learn that I could choose how to deliver the information. I didn’t need to be depressing in my delivery, nor act fake when I wasn’t feeling well. Although there is balance in how I present myself, there is NO middle ground in having an incurable disease. You can’t pretend it doesn’t exist or try to act “normal”. You aren’t “normal”. I wasn’t, and will never be, normal. But why is that a bad thing? It’s not a good thing, but does it have to be a bad thing? It’s just life, my life.

My best support system... my husband.
My best support system… my husband.

I can’t tell you the exact moment that the light bulb went off in my head. I guess I just got tired, quite literally fatigued, from putting on a fake face of bravery. I still put on a brave face, but now it isn’t fake. I am brave, and I am ill. But I now know that those things don’t have to be contradictory. Being strong means being pro-active. To me it means sacrificing my comfort in order to bring about awareness for others. Last year’s Fibromyalgia Awareness Day was a great example. Having others share their support of me was embarrassing, but helped to show that Fibro is part of me, part of my family, part of all my relationships.

♥Mom, the O.G. Advocate ♥♥BFF, my Cheerleader ♥♥F-I-L, Empathizer-in-Chief!♥

Once I started posting on Facebook about the days I was having flare ups, I was surprisingly supported by my friends. People began to see how often those days were and therefore how much of my life it effects. In an effort to create that balance I so desperately want, I also make sure to post pictures of my happy, non-flare days. The days when I refused to let Fibro hold me down.

This was on my 30th Birthday, and here I was feeling so victorious over something I did with such ease as a 7-year-old. But I don’t care! I did it!

This is the balance I’ve begun to learn to strike. I say begun to learn because I’m working on it every day. I still tend to hold back the negative info when I’m around people face to face, but I’m working on it. I’m learning to be authentic and except being loved when doing so. I’m also learning that there are people who just aren’t going to give a damn, or will see me as a whiner no matter how much grace with which I try to deal. That’s OK too. People have a right to see this the way they want. All I can do is be genuine, be honest, and most importantly, be strong.

10 thoughts on “Being Honest with Others about Having Fibro; Learning to be Open while not Bellyaching

  1. I’ve been married for 9.5 years and I never told my in-laws about my anxiety disorder. I went through depression, strong suicidal thoughts, night terrors and torturous panic attacks while they remained none-the-wiser. To them, I was just their silly, cynical daughter in law. But then I had to live with them for a while, so there was no more hiding it. So I hid. I respectfully withdrew to my room… A lot. One day they started on me about how I should be more of a go-getter, and so I felt I should in that moment let them know that I struggle with anxiety which makes it difficult to function in that way. They proceeded to tell me that I did NOT have anxiety disorder, they equated me to a hypochondriac and told me that even if I did have GAD I couldn’t use it as an excuse.
    What? 7 years of hiding my mental illness, I finally mention it and suddenly I’m “using it as an excuse”? Lol. Memories of all the times I had overcome the anxiety to participate with them and express love toward them and make memories with them immediately flashed through my mind. I was heartbroken and humiliated. That was over three years ago and I vowed I would never mention my struggles to them again. And I haven’t. I’ve gained a ton of control over my anxiety since then and manage it very well, all things considered. I refuse to medicate as well, so it’s all my own self-work. Most days I’m at peace and I have learned how to use mental blocks. No one celebrates that with me, but I’m victorious regardless. Now that I’ve been officially diagnosed with fibromyalgia, which is highly associated with anxiety disorder, i can’t imagine opening up to them about it. Unfortunately I’m stuck with a family who has no compassion whatsoever for invisible illnesses, so when I don’t feel good and I have nothing left to give, I have no excuses in their eyes. So instead I just have to let them think that I’m rude or uninterested. I utterly despise the lack of fibro awareness (and anxiety disorder awareness). It forces me to be misrepresented, and that’s just not fair. If there’s one thing we should all have control of it should be how we are represented. Anyways, I’m glad you feel empowered. That’s a huge deal. Stay strong.

    Like

    1. I applaud your bravery in sharing your story. I know that it can feel as though you are being forced to hide when those around you don’t understand, or want to understand, the life you are forced to lead. I’ve been there. Most of my family doesn’t believe Fibromyalgia is real, despite seeing me battle it since I was 15 y/o. It hurt deeply feeling cast aside by those who are supposed to be the first people in this world to believe me. So, after some inner work, I created a family made of close friends who support me in the way I not only need, but finally see that I deserve. Follow your instincts that tell you that the way they dismiss your illness is wrong. Don’t second guess yourself. You can love those people and also not agree with how they treat you. Work to surround yourself with people, who maybe aren’t blood or marriage relatives, but that are faithful caregivers and offer you empowerment. Stay strong, and remember that you are the one who decides how you see this illness. It can be a challenge that you work to overcome day by day, or even hour by hour. Or it can be the curse to which others may want you to succumb. Its your life, your body, your choice.

      Like

      1. Thanks for the encouragement. It’s, in a way, comforting to know that there are others out there with such similar stories to mine. I do my best to focus on the parts of my life that I *can* control and that’s how I stay so grounded otherwise I’d melt into the earth, I’m sure. It also helps me to live in the moment, enjoy the little things and grow as a person more quickly. I’ve learned that, as disappointing as it can be, I don’t need validation from people who have no medical education. I just needed a doctor to say “yes, I see and agree that something is wrong with your body.” And I was lucky enough to have that opportunity. So I’m very grateful for that. I’m so sorry that you were hurt so deeply too and that they still don’t understand. And you’re right, I really need people around me who respect me and support me. Thanks again 😘
        P.s. mine started around age 15 too! intriguing!

        Liked by 1 person

        1. Good for you girl! Although we are hard wired to fight the “meltdowns”, my husband has helped me over time to see that every so often a meltdown in neccasary. Sometimes our pain/b.s./fatigue/frustration pot can become full. We need to lift the lid and let some steam out every once in a while, often in the form of tears. I always feel better after letting myself be upset for a minute. Its ok to feel blue because ignoring that feeling can be to our own detriment, right? Its all about balance. We are stronger than most, but not robots. Nobody needs to know that more than our own selves!

          Like

  2. This is great (not your fibro-but your openness)! My daughter’s name is Talia! I too am trying to learn to be more open about having fibro, as I don’t want to be a whiner, a complainer, or a victim. Good for you. Seems like you have a great support system! Best wishes, Natalie

    Liked by 1 person

    1. Thank you Natalie! Its a long journey, but there is no need to go it alone. Its an ever changing process that never ends, but us Fibros are made of some strong stuff!

      Like

  3. Good for you I wish I had you ability to share.ppl ,meaning family and friends could careless about my .situation.I spend most of my time trying to fight it myself.I’m so tired of being tired not able to make plans ,and as a young widow tired of walking this walk alone.even my Dr.does not understand.I feel like I’m going in a circle.I no my God will deliver me from this..I have faith life will be normal again Im looking for a miracle.I expect the impossible.

    Like

    1. To Miss “Someone”, don’t feel alone. Those of us in the Fibro community are here for you. We can’t always expect those who don’t physically feel what we feel to truly understand our struggle. There are support groups both online and in person where you can meet other people dealing with invisible illnesses. How long has it been since you were diagnosed? Have you considered speaking with a therapist about how to process the world around you given it doesn’t understand the life you live?

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s