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The Assumption Not to Make About Moms With Fibromyalgia

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It was such a beautiful fall day yesterday that when I glanced outside to take a peek I thought to capture a picture of it from the couch where I was inside looking out. You see this is where I spent my Saturday, sleeping off and on while in a brain fog feeling quite ill, listless and fatigued with malaise. 

Just as I posted the photo to Instagram expressing how lovely the day was, that nasty voice of fibromyalgia whispered in my head, “If it is so lovely of a day, don’t you think everyone who sees this is going to wonder why you aren’t taking a picture of you out enjoying it instead of here inside the window?” I ignored it. I don’t care what others think. They don’t have any idea.

I have been feeling so good these past couple of weeks, and I mean better than in so long that I have been excited for life again. But today fibromyalgia hit me. The fog and fatigue. The rapid breathing and sweating. The feeling of being sick with the flu without actually having the flu. Sometimes a day of full body pain is better than all the other common odd symptoms like this put together. I don’t know how or why it hit but I was not functional for most of the day. 

I was invited and had made a commitment to attend a women’s fellowship at church that night so I wanted to get rest and feel better. I am tired of worrying about how I will feel if I plan to go somewhere. I can’t pretend Facebook is a good substitute for social life or that it is OK to continue to be anti-social in real life, so I was determined I would still go no matter how I felt. I’ve been missing weeks of Sunday service so much that it had now turned into months, so I wanted to slowly get back into going to church and thought this would be a great ice breaker. I thought a bit off and on during the day that maybe I’d call and let them know I wasn’t well enough to attend. Then just as often I’d self talk, telling myself it would only be two hours to deal with then I’d be home again where I felt safe, and besides I usually feel better in the evenings. 

One of the ladies offered to pick me up for the meeting and by that time I did feel a bit better. As she walked to her car I found I was lingering behind her and thought, “Do I really walk this slow when I don’t feel good?” You see, I haven’t done anything in a long while outside of home and work, and as you can imagine I was noticing how different I really was. People say fibromyalgia is an invisible illness, but is it really? Don’t they see how slow I walk, how slow I take to get into the car, how I stutter my words when I try to talk, or how my face scrunches and squints from the pain as I sit in the hard chairs next to them? I think these things can be quite noticeable. I noticed them.

The meeting went well for me. Everyone was surprised to see me and asked where I was attending church. I felt OK telling them I hadn’t been attending any church and had hoped someone told them of my condition or that in some way they knew from the pain in my eyes. We had some snacks and beverages, a devotion, and did some coloring, so I was able to participate easily in the activity and it was nice to take my mind off how I felt.

On the way home the lady who gave me a ride began to tell me how blessed I was… and then she paused. I, thinking she was done talking, responded with, “Yes, I am very blessed,” and thought she was referring to the comment she made earlier of how large my home is. She continued where she left off and said that I was very blessed to have the support of my husband and daughter. That if she were to be ill or if she were to “get something” her husband and daughter would be lost without her. She went on to say that she does everything and she can’t even get a cold or take a nap without being interrupted by someone that needs her.

I responded with, “My family is supportive, but sometimes they don’t know what to say. Sometimes I tell my husband that the laundry is not going to get done but he never complains. Never.” I was thinking at this time she had to know I was talking about much more than the laundry… that I was referring to “everything”… the house not being taken care of or the groceries not getting bought or dinner being planned. And no, he never does complain about those things that mean everything to many of us moms.

I went on to talk about how loved we moms are because we are always the person that is asked of the most, and even when we go to the bathroom our pets can’t go without following. What I wanted in this was to let her know that is just who we are as moms. That I am a mom too and relate with her. That my house is like hers too, with or without fibromyalgia. That moms are so important. Even if I am not doing my “everythings” anymore as I once did, I wanted her to know that I am that kind of mom too, but what I said didn’t seem to come out like I’d like to.

I never seem to think of good responses until after the fact. Yep. That is the problem with me. Then I miss the opportunity to cause a thought-provoking response to others to think about what they said. If she truly thinks I get pampered I’d like her to take a look from the outside into my world before she tries to assume herself in my role.

Fact is, I do everything too, all the mom “everythings” that she is talking about. Just because I have fibromyalgia doesn’t mean I am waited on hand and foot, that I don’t have any responsibilities any longer or a care in the world, that I don’t get interrupted in my naps. That to me is not the support I want nor is it what I need.

People who do not have chronic illness can’t be blamed for not understanding what we go through, but they should also not assume to put their selves in our shoes either. I suppose it is only human nature to do so in order to try to be empathetic, even if we don’t mean to be selfish doing it.

I know she didn’t mean anything by it, but I’d hoped after all is said and done fibromyalgia is not painted as a picture of a life less interrupted. Because you still have to function as a mom. You still have to take care of everything you did before. My looking through the window to capture a picture of the beautiful fall day from the inside looking out is a lot like looking through the glasses of fibromyalgia.

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Originally published: November 7, 2016
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