The benefits of having a chronically ill parent

It's a strange post title, I accept that. It is easy to think of all the downsides of parenting with a chronic illness, and to feel guilt at the perceived negative effect it has on children. However, when you shift your perspective, you can also see some real positives. 

Please excuse this roughly written blog - I wanted to write it while the thoughts were fresh in my mind, but I'm in a lot of pain and on medication that makes my brain fuzzy. 

The photographs in this post were all taken during this current flare up, which started a couple of days ago. They don't show the tough moments, where I'm lying on the sofa in pain with my two year old screaming because I won't hand over my ice pack. I wanted this post to be a positive one, but also in those moments I'm not usually thinking about snapping a photograph!

Care & empathy

My children are so caring, especially my six year old. I started to really suffer with my endometriosis when he had just turned two, so for five years he has been learning that my health is unpredictable. 

He has seen me at rock bottom, in tears, barely able to move off the sofa. At first this was scary for him, but now that he knows more about my illnesses he simply goes about the business of trying to make me feel better. He sticks to me like glue. He will ask if I'm OK, get me cushions and blankets, a drink of water and give the nicest hugs. My two year old daughter is starting to follow her big brother's lead, between tantrums of course, which is lovely to see.

They always seem to know when I need the extra cuddles, even if I'm trying to hide the pain behind a smile. 

Understanding differences

Through my own experiences and by being part of chronic illness communities online, I've learned a lot about different physical and mental health challenges that people experience and continually try to educate myself. 

I try my best to mirror this with my children in age-appropriate ways. If I notice them looking curious or worried about someone that's a bit different to them in some way, I talk it out with them. I also try to choose a wide range of children's books, films and TV shows for them to watch. 

Self-awareness and self-care

My children see me doing things to keep myself well, and I make sure to talk about it. I feel it's important for them to know that mams need to look after themselves as well as others. I also talk to them about things they can do to look after themselves, like eating healthy, exercising, relaxing. 

You can also be damn sure I'll be educating my daughter on menstrual health. Endometriosis is more common in people who have a close family member that has it. I don't want her to be in the position I was in at 13, suffering and being told it's 'normal', and she certainly won't be waiting 15 years for a diagnosis if she is unfortunate enough to have symptoms. (I place no blame on my mother for my situation at all because, as most people would, she trusted what the doctor was telling us.)

Compromise

Yes, there are times when my kids want me to take them somewhere or do something that I'm not physically or mentally able to when I'm feeling poorly. What they learn here is compromise, that we can't always do everything their way. When I tell them I can't do what they want, I always provide alternative suggestions. I might not be able to take them to the park but I can put on music so they can have a living room disco. We might not be able to go to soft play (pre-pandemic) but with their help I can make a camp in the living room to play in. 

Yesterday I would have loved to take them out, but I was poorly plus the weather was terrible and indoor options are obviously limited right now. So instead we made biscuits and played with gloop - fairly easy activities, but fun for the kiddies. When S was napping, W and I played Guess Who. He put cushions on the floor for me to sit on and set it all up for us 💗.

Appreciating the good days

This one is more about me than the kids, but an important point about chronically ill parenting. On those days where I feel well, and manage to do more adventurous things like taking long walks or full days out, I truly appreciate it. The bad days definitely make the good days even better.

Sending love to all the parents out there - it's not an easy job and we all have our struggles. 

Sam x