As I sat at dinner with my children one night, my 7-year-old asked me something so profound that I didn’t know how to react or respond. “Mommy, how come Daddy does everything for us and you don’t?” My jaw dropped. “What does Daddy do?” I asked. “He cleans the house and makes us dinner. He takes us to school. He takes us places like on nature walks and the park and bike rides.” “And what does Mommy do?” I asked. She thought for a minute then responded: “You go to work and you come home and lay on the couch.”
I wasn’t angry or upset because it’s true. For the past year my husband has been the one doing all the parenting activities that are normally reserved for the mom. You know, the things that moms are always complaining about being underappreciated for and writing top ten lists about and wishing their husbands would help with.
I have always been a work horse and still am but last October I went on a medical leave for five months due to what I now know is Fibromyalgia. I spent my days on the couch unable to cook, clean or do pretty much anything. It was the first time in my adult life I couldn’t work. The pain prevented me from doing all the things that come natural to me as a hard-worker, a mother and wife. I became overwhelmingly depressed and my kids and husband were left to carry on without me. He picked up my slack with no complaint all while working nights managing a bar. He kept the kids at bay when I was having hard days and made sure they were dressed, fed, hair brushed and homework done. He took them out on adventures after school so I could have more quiet time as he knew I was sensitive to sound, including the sound of my own kids’ voices.
My depression got even worse as I began to feel like a bum mother. What was wrong with me? Why couldn’t I just do all the “mom things” I wanted to? I judged myself harshly and beat myself up constantly over my inability to care for my children, my home and my husband. I should be the one taking them to the park and making their breakfast in the morning. These were things I felt were my way of contributing and bonding with my kids. If I wasn’t helping my son brush his teeth in the morning then what was my role? I felt lost and displaced. Without realizing it I had distanced myself from my family out of self-loathing and disappointment. I began lashing out at my husband, picking fights with him for reasons I can’t even remember now. I only know it was only out of anger and frustration with myself and envy for my husband’s abilities and strong relationship with our children. I resented him for being the better parent.
I apologized a lot, but never to myself. I apologized to my husband and children who were so kind and understanding it made me feel even worse. My husband supported me and was perfectly content to assume both roles in our household. When my daughter asked me that question, I asked her how she felt about it. Her response was simple: “I don’t mind.”
That’s when it dawned on me that my kids didn’t see it as “mommy’s job” and “daddy’s job.” They don’t care which one of us it is taking them on nature walks or dropping them off at school, they just want us to be happy parents. I realized they were bonding more with my husband not because he was the better parent but because he exuded happiness. He spent time with them and all kids really need or want is your time. And I was wasting time wallowing in my self-pity and anger over my disease. My kids saw me unhappy, depressed and resentful of their father. I was toxic.
That’s when I decided that just because I couldn’t go on a five-mile bike ride or hiking in the woods or even wake up early due to side effects from my meds didn’t mean that I couldn’t participate in my kids’ life (and my own)! I sat down and explained to them Fibromyalgia as simply as I could. I told them that although I couldn’t do all the things that Daddy does, we could still do things together like homework, art projects and reading. They excitedly began rattling off ideas of things we could do together and relief swept over me.
I finally went back to work which helped with my self-esteem and gave me back a feeling of contribution to the household. My husband still does the majority of the parenting only now I’ve realized he does it because he wants to – because he loves me and loves our kids and understands what I need. His abilities as a father do not take away from mine, they only compensate for the abilities I don’t have and I realize just how lucky I am to have a partner who truly believes and understands me.
I’ve noticed lately that I have been gravitating toward my dog more than my kids. I talk to him in a baby voice but yell at my kids, I share spoonfuls of yogurt with him but tell my kids they can’t have any, I cuddle up with him under the blanket but make my kids stay in their beds at night. At first, I thought what kind of monster am I? I must be an awful mother. But now that I am more conscious of my behavior, I understand why. So here is a list of why someone with fibromyalgia might be more tolerant of their dog than their kids.
- Kids are loud. One of the symptoms of fibro is sensitivity to sound. Sometimes a scream from a child will literally feel like an electric shock to my entire body. The sounds of their voices can literally be painful. My dog, on the other hand, is a pretty quiet guy aside from the occasional bark at a passing mailman.
- Kids do not understand the connection between their bodies and mine. No matter how many times I remind them, my kids continue to lay their heads on my shoulder and run at me full force for a big, hard hug. While I can never get enough of their affection, it hurts. And it gets real old reminding them to be gentle with my body 50 times a day. My dog, on the other hand, seems to know when I’m in pain and will lie against me or tenderly set his head on my stomach. His body heat does wonders for my achy joints, too. It’s like having a 75 lb. heating pad that never turns off.
- Kids don’t care about your time. By the time I put the kids down to bed, I have usually been going for 12-14 hours. I work full-time as a dog groomer which is incredibly physically demanding and stressful. My husband and I are also trying to start a home business. So come 9:00 after the bedtime stories are read and I’ve tucked them in, I’m clocked out. But the kids will get up another five times with some ridiculous excuse to stay up a little longer. It drives me insane, almost to the point of tears. I need at least an hour of “me time” before going to bed but I rarely get it. Then, of course, they have to wake me up first thing in the morning on my days off despite me having reminded them the night before not to do that. My dog, however, is lazy. He is content to spend all day and night laying on the couch and doesn’t require much attention. Just let him into the yard and he’s good for the rest of the night. He doesn’t wake me up in the morning to go outside, either. And when I tell him to go to bed, he actually listens and takes himself up the stairs.
- Kids are stressful. My kids are so demanding. They require attention 24/7. Sometimes it gets so overwhelming. My anxiety, fatigue and constant pain are stressful enough and I am always on edge as it is. Add some fighting children to the mix and it’s a perfect storm for me losing my temper. My dog, however, does whatever I want. He leaves me alone when I need it and cuddles up to me when I’m feeling bad. He’s low-maintenance and easy going and I often find just the act of petting him to be soothing. There have been many times I have broken down crying from stress or pain and my dog nudges me and lets me put my arms around him and sob for as long as I needed.
Being a mom with fibromyalgia is insanely difficult and we sacrifice a lot for the happiness of our children. I love my kids, they are my life, but I depend on my dog to balance out the craziness of parenthood and think of him as a child. At the end of the day, it feels good to know that at least one of my kids actually listens to me.
Can you imagine a parent forgetting to register their child for school? Because I have done that. I forget not just my own commitments but my kids and I get so angry with myself over it. What kind of a mother doesn’t pack an afternoon snack to bring to school? What kind of a mother misses entire days’ worth of antibiotic doses? What kind of mother sees that her children’s rooms are in shambles but does nothing about it? I’ll tell you who. A mother with fibromyalgia.
I am a very disorganized person. I make lists then forget them. I make appointments and miss them. I have two calendars but can’t remember to use them. I am in a constant state of brain fog, affectionately known as Fibro Fog to those of us with the disease. While I’m sure this is an incredibly frustrating thing for everyone dealing with it, it is exceptionally tricky for parents and caregivers. Not only is it annoying, it is embarrassing and scary. People tend to look down on messy houses and skipped commitments much more when it involves children. I take extra care to try and remember things, at least for my kids but a lot of the times it just doesn’t happen and I am constantly afraid of the consequences. My mother has frequently berated me; “I cannot believe that you keep forgetting your daughter needs new shoes!” She often tells me I am careless and self-absorbed and that is why I forget such basic things. I’m not, I really just forgot. I want to scream this at her and everyone else who accuses me of being careless or lazy. I forget everything all the time and I feel bad enough, I don’t need others to make me feel even worse.
Not only are my children perpetually late for everything but it is guaranteed that they are missing something whether it be a snack or a permission slip. My seven year old keeps better track of her due dates and school functions than I do. Some might say well get a calendar so you can keep everything organized! Yeah, that makes sense to someone who won’t forget to write things on the calendar and/or look at the calendar. But forgetting school stuff isn’t even the worst of it.
I forgot to give my son his antibiotics for three days in a row. Just completely forget that they existed. Then the anxiety sets in. What if he gets sicker? Then I’ll have to tell the doctor I forgot his meds. Then the doctor will call child services on me. Oh god what have I done?! My son is fine; perfectly healthy. Don’t we all forget to take our full round of antibiotics anyway? But it’s different when it’s a child. I am afraid of being judged by other parents and by their teachers. I am afraid of a doctor saying something is wrong because of my neglect. I am afraid of my kids getting left out or teased because of me. I am afraid of someone coming over and going and telling other people “you won’t believe how messy her house is – I can’t believe she has kids!” But so far in my seven years of momming none of these terrible things have happened and my kids some pretty much unaffected by my foggy brain. We have learned to laugh things off for the most part. My husband is in charge of keeping track of everything. My keys, my doctor’s appointments, what day it is, and what planet we’re on, etc. There have been a few monumental screw-ups on my part like when I forgot my daughter’s dress rehearsal for the ballet recital she had been prepping for for a year. She wasn’t allowed to be in the performance because of it. My daughter was over it in a matter of hours but I spent the better part of a week verbally assaulting myself over it. I’ve forgotten to pay bills resulting in a shut-off notice and forget birthdays on a regular basis. I’m a mess.
But I am training myself to stop abusing myself because of it. Just like everything else that is a result of fibromyalgia, this is not my fault. I am learning to be more open and honest about how my brain works (or doesn’t, I should say). I set myself notes in my phone with an alarm to remind me and make sure to pass information along to my husband immediately before I forget. Someone who loses her glasses ten times a day and spends her evening walking into room then forgetting what for should not be in charge of anything important. We have found a good balance and the missed appointments and forgotten performances have gone down to a bare minimum. And if I do forget something, it’s not the end of the world. No one has the right to judge me if they aren’t living the life I have. My house isn’t messy, it’s lived in. And my children are not going to be ruined because I forgot a school mate’s birthday party. However they will remember a mother who constantly apologizes and beats herself up, so that is the behavior that has to stop.
Chronic pain is invisible. People can’t see our pain and most of us try so hard to make up for our symptoms. We smile more, laugh more, work more, push more. But there is a dark side to chronic pain, a side most of us will never talk about to anyone but a fellow fibro friend. We certainly can’t talk about these things with other moms. We are afraid to mention it to our doctors in fear of being institutionalized or losing our medications because we have been labelled “addiction risk.” So I’ll just say it: Some days, when I think about the fact that I have felt like this for over a decade and will feel like it for many decades to come, I wonder if life is worth living. And I am not alone. So many women – mothers, wives, daughters, teachers, students, mentors – feel the exact same way. Lately, with the onset of winter, I am seeing this conversation happening more and more. But you know what? It makes me happy.
Not only is chronic pain highly stigmatized, so are depression and suicide. It is safer to keep it to ourselves. Discussions are filled with statements like “I would never actually do it but…” Recently a gal posted in one of my fibromyalgia groups about shooting heroin. She said “I would never touch heroin but sometimes I just want to inject myself with heroin to take the pain and depression away.” My heart cringed for this girl because I was afraid for her. I was afraid that people would respond negatively and put her down for her feelings. But to my surprise her post led to a long string of resounding understanding and agreements. Women began not only admitting to fantasizing about trying heroin but also to suicidal feelings. It was the most powerful, liberating conversation I have seen. Everyone said screw the stigma and let’s talk about this! How incredible.
A woman recently asked the group if having children was worse for fibromyalgia. Again, overwhelming and honest responses began flowing. My chest was bursting with joy as I read through everyone’s comments. So many moms candidly talking about their feelings of depression, anxiety and suicide. I am not alone! But every mother’s answer to the woman’s question was that their kids save their lives every day. Their children are the reason they push through and cope. I realized their stories are also my own.
Every morning I wake up stuff, muscles on fire, joints stabbing me, exhausted whether I got 6 hours or 12 of sleep. I wake up realizing that I have to get through another day like this. I wake up feeling as if I didn’t want to wake up anymore. Then my children burst into my bedroom thrilled to see me there. They hug me and kiss me and wish me a good morning and their warmth soothes the pain in my mind. I forget about my desire to no longer live through this. I forget about the incessant pain, the unceasing fatigue, the frustration of my poor cognition. I get up for them. I go to work for them. I come home for them. I agree to carry on for them. My children remove me from myself and I belong to them, not to my disease.
My story is not unique. There are millions of me. Moms battling their bodies for the little people in their lives. Women fighting through not only physical symptoms but living face to face with this disease. We choose to live. We accept this sadness, this daunting condition, this bottomless depression so we can live for other people. Because when you have fibromyalgia, or any invisible illness, you have to decide whether to end the pain now or endure the suffering for a lifetime. We choose to battle ourselves, to keep smiling in the darkness. When we choose life, we deserve the respect to speak openly and vent honestly without fear, without shame and without stigmatization. Speak up, moms! Speak up, women! We are warriors and our fight should not be a secret.
Without our true, honest voices, fibromyalgia will remain invisible.
“Mommy, do you want to come on a walk with us?” My daughter asks me this every time her dad is taking my kids on a nature hike. And every time my answer is no. She knows I won’t go but I suppose she asks just in case one day I’ll say yes. So off they will go with flashlights and jars to catch lightning bugs, leaving me on the couch with my guilt and pain medication, feeling the weight of guilt on my chest.
Guilt is a common symptom of fibromyalgia, especially if you’re a parent. Missing out on so many of your kids’ activities is a daily heartbreak and the guilt can be overwhelming. You feel guilty for not being able to go on walks, you feel guilty for being crabby, you feel guilty for getting them to school late because your medication makes you groggy in the morning and you feel guilty for your partner for having to make up for you.
Ask anyone with fibro and they will tell you that they are constantly apologizing to at least one person in their life. Whether its children, parents, partners or friends, guilt might as well be classified as a symptom. I frequently decline invitations to dinner with friends, miss birthdays, etc.… and spend a large amount of my time apologizing to them, but I apologize most to my children the most. I am sorry I can’t go on walks with you. I’m sorry we didn’t go to your friends’ birthday party because I just wasn’t feeling well and daddy was at work.
Children are naturally compassionate little people and surprisingly have a good grasp on my illness they can’t even pronounce yet. When my kids want to lay on me they now know to ask “Mommy, does this hurt you?” When I’m moving slowly they ask “Mommy, does your body hurt you today?” It brings tears to my eyes and I wish they didn’t have to ask those questions. I wish they could flop into my arms without worry. They deserve a mother who can do all the mom things she’s supposed to, including cuddles and hikes and birthday parties.
It’s hard to not get lost in the guilt but you have to constantly remind yourself that it is not your fault. You should not apologize for something that is out of your control. When you explain your illness to your kids you’re not making excuses because it’s real and it hurts. But a mother will do anything to protect her children from pain, emotional and physical, and it feels like I am hurting them when I have to opt out of activities or when I have to ask them to stop touching me because it’s too painful. What kind of a mother does that?
But then I remember that I have raised intelligent, compassionate, loving and resilient little humans who get everything from me that I can give. Between their father and me they get all the love they need. When they’re adults they’re not going to remember mom missing out on nature walks but they will remember how loved they were and are. I am not damaging them, but my guilt is damaging me and I have to learn to let go of it.
All a mother can do is the best she can with what she’s got, and I’ve got a lot of love to give.