Parenting with a Chronic Illness

Being a parent comes with its fair share of daily trials and challenges. Everything from lack of sleep, tantrums, playdates, nursery, sports and clubs, school and homework. The never ending battle of cleaning the house and doing chores – all of these things can be exhausting enough for the average parent. But what if you are a parent living with a chronic illness? Has the struggle just jumped to about ten-fold?

Problems arise from not only trying to live this life but also finding ways to explain your chronic illness to children.
I found it wasn’t just children I had trouble explaining things to. It was other parents, family, and friends, and other mummies who I found immensely difficult in making them understand chronic illness and how I was feeling. I wanted them to be empathetic without giving them the impression that I somehow “couldn’t cope” or was a “bad mother”, whilst inside I was fighting a crazy, emotional battle of not being good enough. I did all of this in a fog of pain and exhaustion and constantly holding back the tears.
Even writing this now brings to the forefront so many raw emotions that it’s very difficult to express in words how I felt, and still sometimes feel. I think a word that sums it up is “inadequate”. Yes, that’s exactly how I felt on a daily basis.

Comments from other mums weren’t alway helpful and I was often confronted on the school gates with:

“I don’t understand how you can be ill, you look so healthy!”

Other classics like:
“I hope you feel better soon”

I felt a failure as I often had to cancel social arrangements and that in turn can be very isolating.

Now as my child is a bit older, there are things I wish I had told my younger self about how life can be a little easier now, but I’m still learning ways to cope. No, it doesn’t stop the pain, the exhaustion, and the awful symptoms that come with living with a chronic illness.
But I’m a little bit wiser.
I suppose I now realise that in fact, housework isn’t everything. I understand that a certain level of cleanliness has to be done, but if the clothes are not ironed every day or the house hoovered, and a bit of dust is present, or you don’t have the energy to read a book to your child, that at the end of the day he or she will still turn out ok.
Living life with the unpredictability of chronic disease means never knowing when or how it will strike. (it’s not an “if” situation, but a “when”. The bad days come often, and they come in bucket loads!!)
Your children won’t actually see you as sick or ill. Yes, I tried to explain to them why I couldn’t take them to the park or the soft play area when I was feeling unwell. But they didn’t actually see me as a sick person, I was still just Mummy. But it was still heartbreaking. Even with hospital visits, I tried to keep everything very normal and factual and that reassured them that, although I was poorly at this time, Mummy would be OK and the doctors had everything under control to keep me safe and stable. That also helped them understand what was going on.

I have found that my child has grown up with an amazing level of acceptance of others, and is actually a very good advocate for anyone with a disability. He has become very caring and considerate of others. Also, stability – providing a stable home and love and support and cuddles was more valuable than any latest toy.Our children live, as do we, with so many insecurities and questions about the future. All I can offer is honesty, openness, and providing age appropriate answers to my children. That in itself is not an easy task, but an important one to keep them at ease and, thus, feeling secure and happy.

Living life in the moment is important too (no, I’m not going all hippy dippy, mindfulness stuff), but in a way it’s true, I take each day as it comes.
One of the negative problems I find is that I often fight through the pain and symptoms to provide a good day for my son, and this, in turn, takes the attention away from myself and my need to provide a sense of “normality”.
Being chronically ill has changed me in a way. But I do truly believe my son is kinder and has more empathy than many kids of the same age. I know that he values my honesty and openness and he is a kind and sensitive person who will grow up with these values as his own.
I have found this part the hardest lesson learned…
To let go of guilt. To remove the guilt, although some days this is impossible to do. I know this is the best thing I can do.

Posted 13th January 2017