“Will they cut off your hands and give you metal ones? Are you going to die?”
I will never forget these words from my daughter, nor how scared she looked as she asked them.
Of course I reassured her, but I was scared myself. We’d all been alarmed at how quickly I’d become so unwell, a speed that was not matched by how long it took to get a diagnosis. This delay left us all in the dark. Why wouldn’t my hands work? Why couldn’t I cut up food, hold cutlery or do up my own clothes? Why did I get stuck in a sitting position, and struggle to walk or get out of the car? Why was I so exhausted? What was wrong?
When the answer came – rheumatoid arthritis – it was still pretty bleak, but at least we had something to go on. I had a way to explain to my children why my body was acting this way.
Having an autoimmune disease while trying to parent your children is HARD. You’re exhausted, low and everything hurts.
Yet children still need to be fed, comforted, played with, listened to, taken to school and activities. And if they’re very small, it’s even more physically demanding – feeding, lifting, carrying, bathing, dressing, changing nappies, occupying them through the day and soothing them into the night.
All this is demanding even when we feel 100%. When our body is struggling, it can feel overwhelming and emotional.
On top of that, it’s common to worry about whether our children might develop the same condition, and what it’s doing to them to see and experience us being so unwell.
If this is you, and you’re in the thick of it, I want to send you encouragement, as a fellow mum who’s lived it.
Yes, my children lived through some bleak times when I was at my most ill, and it was hard, but they are better people for the experience.
They are kind, compassionate and resilient. They know how to be helpful and look after themselves and others. They notice when someone needs help, and they know how to step up and offer it. They can make meals, change beds, clean up and generally know how to chip in, and how to cope.
Importantly, they can put up with times that aren’t all fun and pleasure and they know they can get through them. They persist. They can endure. They are all ok.