Having a Chronic Illness Adds a Whole Other Layer of Mum Guilt

Being chronically ill is exhausting. Add some children into the mix and some (most) days I feel like I am trying to walk through mud, out of spoons before I’m even out of bed. I make bargains with myself all day long; juggling trying to be a good mum with trying to treat my body kindly and not beat myself up when I’m feeling beat up. 

I find that I am always pushing myself just enough to keep them happy, but not so much that I’m left hobbling about, necking painkillers like smarties and I am always trying to figure out how to reconcile the part of me that buys into empowered feminist narratives around self-love, self-care and taking time to heal, with the part of me that has two small people to keep alive.

Because ultimately my body might need to rest, but they don’t. 

A friend recently asked me what it was like having children. It’s the very best, and worst thing I have ever done. I would die for my children, but often I think I might die because of them. 

Parenting is exhausting, demanding, often thankless, relentless – but it’s also so wonderful seeing the world through brand new eyes that find joy in everything. Having a chronic illness and being a parent to two children though, means that my default emotion is guilt. 

Guilt that I can’t run and jump and do the rough and tumble play they love. Guilt that I need time to recover and rest after days out when they just want to continue the fun. Guilt consumes me and then I feel guilty for feeling guilty because the rational part of my brain knows that it is not my fault my body can’t keep up.  

When I was first diagnosed with M.E., a doctor told me that having children would be too much for my body. He said that giving birth, and recovering would be too difficult and his advice would be to not have any. Women don’t need to have children to feel complete. But I do. Women are more than their wombs, we are more than mothers, but having children was something I knew I wanted in the future.

I feel like nothing really prepares you for becoming a parent, especially a disabled one.

I knew I might struggle with being pregnant and giving birth but I just did it anyway. I am a terrible pregnant person; less glowing, and more throwing up until week 22, some of my friends breezed through pregnancy and ended up with thicker hair and bigger boobs; I had such bad heartburn I was bulk ordering American antacids from Amazon and I was so sick throughout that I went into labour weighing less than I did at my booking in appointment. 

With my second child, I also managed to break my coccyx falling down the stairs which added a whole new layer of hell to my pregnancy “journey”, but… My ME symptoms improved?

Talking to other people with M.E. I discovered that this is pretty common. It’s not very clear why, but the hideous muscle pain I usually feel 24/7 just vanished. It kind of made the whole pregnancy thing manageable as I didn’t have the other pain I usually contend with. It was a weird insight into life without M.E.

Becoming a mum is wild. You give birth and suddenly a girl you went to school with but haven’t spoken to in ten years, messages you to say ‘congratulations, I hope you’re breastfeeding??’ Women spend their lives being policed and judged, and having children just provides new and terrifying ways for that to happen. Breastfeeding, screen time, weaning, behaviour, sleeping – oh my god, the sleeping – everyone has an opinion on everything. And so comes more of my old friend, guilt. My children watch too much tv, they know every character on Hey Duggee and can re-enact scenes from Bluey with ease. They eat too much junk and both co-sleep with us. 

At this point as long as neither turns out to be serial killers or Tories, I’ll call it a win and not beat myself up too much but wow, it’s hard. 

The burden of domestic and childcare labour still predominantly falls to women. We still shoulder the brunt of everything and it’s still our careers that take the hit. It is still women who are painted as natural nurturers so that all of the crap we put up with is normalised.

My children are amazing. The best of me and getting to love them is the best thing about my life. But I never feel good enough. I lay in bed at night telling myself that tomorrow I will have more energy, tomorrow I will be a better mum. I will be an Instagram mum who cuts fruit into shapes and does craftsy stuff, but then tomorrow rolls around and my body is screaming at me and I barely manage to be present, let alone perfect. 

I put so much pressure on my husband; I need him to make up the shortfall. I need him to be fun, to play and be everything I can’t be. He has to be good enough for us both and then I feel guilty for expecting so much. I relegate myself to role of miserable moaning mum because that, I can manage. 

I have spent so long feeling inadequate because of my illness, that adding being a shit mum to my list is depressing as hell. I’m not sure what the answer is to be honest, until society recognises how important women are and invests more into better maternity support, postnatal care and high quality childcare; until society stops moving the goalposts of what good parenting looks like and gives us a break; until we stop expecting life to look a certain way.

Last night, though, I was lying in bed with my daughter, stroking her hair and telling her how much I loved her as she fell asleep. She turned to me, and I thought this is going to be one of those beautiful moments that makes it all worthwhile. ‘mummy?’ ‘yes baby?’ 

‘stop breathing so loudly, you’re so annoying.’ 

Lovely. 

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