‘But you don’t look sick.’: The Challenges Of Parenting With Chronic Illness
November 11, 2023
Today is a good day. Today I made it to Sainsbury's and back with very few problems. Today I have very few symptoms. Or at least right now I do. If you saw me in the present moment you might think “She’s not sick”, but that isn’t the case. An hour from now I might be unable to get out of bed and today will no longer be a good day.
This is the problem I wish healthy people would understand. Just because I seem alright one minute it does not mean I’m going to stay that way. Every day I play symptom roulette. I never know what I’m going to get until I get up and try to start the day. Even then it’s never consistent. I can be fine in the morning and in severe pain or exhaustion by the afternoon.
Then there’s the isolation. Social life? Forget it! That said I recently discovered an organisation called Salus Fatigue Foundation and hopefully, a few weeks from now, I might be able to attend a meeting. Then again anything could happen. Having fibromyalgia means plans will change, often at the last minute. I'm always having to second-guess my symptoms.
Day-to-day life is also challenging. I find getting up and down stairs difficult. I've told my landlord about it, hoping I can get moved to a flat. I used to get a wash every day but now it depends on what I have to do that day because a wash, getting dressed, and then doing a full weekly shop can be taxing. Sometimes I’ll get a bath on a day when I don’t have anything to do. Cooking is interesting as I can no longer use a conventional cooker. I have a slow cooker and an air fryer which makes cooking a bit easier.
As a parent, my illness has caused a lot of problems, mostly due to the unpredictability of my symptoms. In 2017 I was hospitalised because of them, in this case, it was severe vertigo which had me unable to walk unaided. At that point, my neurodiverse teenage children had to go and live with their grandparents. Support workers were somewhat less than understanding. As a single parent, I was expected to parent regardless of health issues. To some extent, I understand their perspective. When someone has a hidden illness it can be difficult for people who have no experience of that illness to understand what effect it can have on a person. They often assume that most days are good days when often the reverse is more accurate. However, I needed support and it was not forthcoming.
If I’d known about this illness before becoming a parent, would I have made different life choices? Would I have chosen not to be a parent?
Maybe not, but I would have tried to plan for the possibility of being affected by a condition that has apparently affected multiple members of my family before me. Right now my biggest worry for my kids is that they might end up with it.
As my children are now grown up I spoke to other parents who have similar chronic illnesses. S, a professional musician living with Chronic Fatigue Syndrome, described parenting with the condition as:
“It’s the hardest thing I’ve done by far. It’s stretching me in ways I never thought possible. If it doesn’t kill me it will make me patient. I take every day, every hour as it comes.”
J, a mother with fibromyalgia, who runs a mental health support group emphasised the importance of being honest with your children, maintaining self-care, and pacing. In the chronic illness dictionary, pacing refers to the practice of balancing potentially tiring periods of activity with periods of rest. For example, this might mean having different days for doing household chores and limiting how many are to be done on the same day. For me, this would mean I don’t do housework on the same day as I go shopping but alternate between them on different days. Parenting with a chronic illness is always going to be challenging but, as S said, it is important to take it one day, one hour at a time.
Like with other chronic illnesses, my life has been turned completely upside down and I am now in the process of trying to build a new life from the wreckage of my old one. It’s something I have to do a day at a time. One thing that doesn’t help is the assumptions of other people.
The hackneyed line “But you don’t look sick.” gets me every time.
…and I usually reply “I wish I wasn’t sick too.”