Tips for Parenting with a Chronic Illness

For many would-be parents, the decision to start a family is fairly straightforward. For those who have chronic illnesses, the decision to start a family is much more complex. We have to weigh up whether we can care for and cope with raising a child, whether we will be able to function on less to no sleep and reduced medication, will we have the support needed to raise our children and will my child grow to resent me for not being like all the other parents?

There are many things to consider when parenting with a chronic illness.For my husband and me, the decision was made up before we ever met. I knew I wanted to be a mother from a young age. When my symptoms began to manifest in 2009, I was determined that it wouldn’t prevent me from having the family I’d always dreamed of. We finally welcomed our son into the world in November 2015. To say that the last three years of our lives have been a rollercoaster that I have sometimes wished I could get off of would be an understatement. I’ve questioned my skills as a parent countless times. I’ve felt the nagging feeling of mum guilt and been in what feels like a never ending flare since his birth. Would I change it if I could……………..nope. Have we had to make sacrifices? Of course we have, but isn’t that part in parcel for all parents?

Chronic Illness Won’t Make You A Bad Parent

When I pitched this article idea, our Unchargeables website coordinator Laura mentioned to me her post about her desire for a baby and her worries about being a bad mother. After reading her post, my heart went out to her and many others who feel that they would be bad mothers for having chronic illnesses. I of course told Laura that this wouldn’t be the case. I believe that whatever illness, disability, or condition a parent has won’t make them a bad parent; it will make them a different parent and in my opinion, a better parent. The memories that I make with my son might not be about great adventures. But they will be memories of him being loved and getting to spend lots of time with his mummy, daddy and his grandparents.

Don’t Let Comparison and Parenting Guilt Ruin It

During our pregnancy and from the moment our son was born, it was hard not to get weighed down by comparisons of other parents and the guilt that comes with comparisons. With the easy access to social media, we as parents are inundated with images and stories from other families who appear to have the perfect life, with their perfect homes, well-behaved children, and looking like they are winning at this parental mumbo-jumbo. It took me a long time to realise that they don’t have the perfect life (the perfect life is a myth). Behind the camera, there are probably piles of laundry, toys scattered all over the floor, and a parent who feels like they might never get a decent sleep again. Social media lets people show what they want to show and hide what they don’t want the world to see.

It’s hard to not play the comparison game when parenting with a chronic illness.Comparison and parenting guilt doesn’t only happen online and isn’t limited to spoonie parents. At some point in a child’s life, one or both parents will feel some form of guilt for whatever reason. It could be because they have to work. It could be because they can’t buy them the new ‘it’ toy or getting angry at them. For spoonie parents, the feelings of guilt can manifest into physical symptoms which make us feel more guilty than we felt to start with because we are completely drained of energy.

There are times when the odd feeling of guilt will wiggle its way into my brain and whisper softly in my ear that I am a terrible parent and that I’m ruining my son’s life, because I am unable to take him to the park on my own and that he is missing out. That is when I have to remind myself that our little boy is thriving. He is coming on leaps and bounds with his talking. He’s learning new skills everyday (and new ways to create messes). He is healthy and has my unconditional love and support. He makes me smile and laugh everyday, which make the pain and fatigue more bearable.

Chronic Illness Parenting Advice I Would Give

If I could give anybody who’s thinking of starting a family or are new parents who have chronic illness advice, I would tell them the following.

Get As Much Rest As Possible

Sometimes parenting requires that you take a break.It’s a cliche and isn’t always possible, but the advice of sleep when baby sleeps is one that I stand by. Exhaustion and raising children seem to come hand in hand. Add a chronic illness to that and, to put it politely, you can feel like you’re up the creek without the boat let alone the paddle. But as I said, it is worth it and it is the hardest job you will have in your lifetime. Seeing your child reach their milestones and become their own little person is worth it.

I found from very early on to sleep when our son sleeps; I would still be having day time naps if he was. I resent him for getting older and not needing those naps sometimes! We as a family also established a routine where my husband was very hands-on; he would help me get up for night feeds or would do them for me so I could stay in bed. After working all day he happily takes the reins, letting me rest or get anything done that I need to do but also having some father-son time. It is so heartwarming listening to them play and laugh together.

Don’t Be Afraid To Ask For Help

Have you ever heard the saying that it takes a village? They’re not kidding!! If you are having a particularly bad day, don’t feel like you need to struggle through or suffer in silence. Ask someone to help you out. Even if it’s for them to sit and play with your child so you can take a nap or have a shower. Or ask them if they can bring you meals because you are simply too tired to cook.

I know that it’s not possible in all families, but if there is someone in your family or close circle of friends who you trust who offers to take your child overnight, DO IT!! We are so lucky that my parents adore spending time with our son and he them. They have him every other weekend. Not only does that give me and my husband time to rest, get things done around the home and spend some time to ourselves. It also means that our son is building a close relationship with his grandparents. I was close with mine growing up and I feel that it is important as grandparents can teach kids so much.

Asking for help doesn’t make you a bad parent. It doesn’t make you weak. It makes you strong. It takes someone strong to admit that they are struggling and need help.

Find At Home Activities

Parenting can mean finding easy, at-home activities.No two days of living with chronic illness is the same. One day can be a good day and the next two or three can be bad to one of your worst days ever. On the days where raising your head off the pillow is a struggle, I find it best to make sure that there are activities that my son can do indoors such as counting pom poms. I make up games for him that encourage learning, put on his favourite show or movie we’ve seen a hundred times already, or let him play as I rest on the sofa. Don’t beat yourself up if your opt for the digital nanny from time to time. Even non-ill parents will reach for the tablet or iPad now and again.

Be Kind To Yourself

My final piece of advice is to be kind to yourself. You’ve got this. You will be a kick-ass parent who gives your children the love they need. As I mentioned before, it is the memories of love that stay with us as we get older, not the memories of theme parks, cool day trips or presents. It’s the love that our parents gave us and the support that is as unconditional as the love that is important in our adulthood.

About the Author:

Nicola discusses parenting with a chronic illness on The Unchargeables.Nicola is a blogger who writes about chronic illness, disability and parenting. She lives in central Scotland trying to share her chronic illness journey with the world.

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