Fibromyalgia is Lonely

October 13, 2017

Twice in one week I’ve been excluded from an outing with my friends. I have to decline and cancel so many social events due to my illness that it’s at a point where I simply don’t get invited any more. It’s assumed I can’t make it for whatever reason.

But whatever the reason, it hurts to not get invited. It hurts to see your closest friends go out while you stay at home. Again. For the thousandth time. Even if I have to decline, being included in plans reminds me that my friends still care about me. They still want me to be included even though I have to continuously decline. Receiving an invite says to me, “I know you’re struggling, but we are still here for you and care about you. We want your company when you’re able.” So you can imagine what an exclusion feels like – the opposite of that.

It hurts to know I’m still struggling to socialize after years of living with fibromyalgia and other ailments. Fibromyalgia involves chronic pain, stomach issues, anxiety, depression, sensitivity to sounds and lights, headaches, and more. All of it brought on suddenly and without explanation. It makes socializing hard, and requires an effort of strength I usually don’t have after a day of battling all the symptoms.

Does it get easier to socialize as time goes on? At one time I thought it would, but right now I’m not thinking it will. It’s been over a decade of living with this condition, and I’m still struggling. Not every day or as much as I have in the past, but the social struggle is still as real as it was in the beginning.

Let’s just face it: Fibromyalgia is lonely. Even when surrounded by others, it’s lonely and isolating. Living this life with an everyday struggle makes me sad, angry, then sad again. It’s like being on a hormonal roller coaster not knowing when the next high or low point will be. But it’s there – just around the next turn.

The initial sadness of the sad/angry/sad again cycle sets in after a trigger. A trigger can be stress or, in this case, not receiving an invite. The sad/angry/sad cycle is when there are so many emotions swirling around in a chaotic disarray that you don’t know what to do. Then the anger takes over and slowly consumes your thoughts about why you’re being excluded: the lack of understanding, the assumptions, the illness, the body unable to function properly, the not knowing, the yearning to belong and to be understood.

Yearning to be understood and accepted. That’s when the sadness returns. Why can’t others see I don’t like living this way? I want to be with friends and have fun, too. I love my friends and enjoy their company. Do they not see I have fun with them?

But despite how much fun I have with them, I can’t always hang out. Sometimes (okay, most of the time) it’s because I’m physically unable to go. My body hurts because of me unknowingly doing something that strained my body. However, just because my body is not able to move the way I want/need it to doesn’t mean I don’t want to do it.

Most of the time when I’m laying down because of a physical pain, my mind is still racing with a zillion other things. Things I want to do, need to do, expected to do. It’s aggravating and upsetting when I physically cannot do it. It leaves me exhausted.

Last night I went through the sad/angry/sad again cycle. I cried a lot because when the tears get triggered by a single reason, they continue to fall for many reasons. I thought I would feel better this morning after last night’s crying episode, but I do not. My husband and I have plans with our kids today, but being out and mingling with others is not something I feel I can do right now. But then I think it’s stuff like this that makes me isolated. I just don’t know what to do. Staying in bed all day seems more appealing right now.

Ugh…fibro is winning today and it’s only six a.m.

Disclaimer: Please understand that everyone is different in their journey with fibromyalgia and/or chronic illness. This is my journey, my stories, my vulnerability to share with you in order to help in some way. It is in no way to compare my journey with yours or to minimize your pains, feelings, or experiences. Please do not comment with any negativity.

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