Chronic illnesses such as myalgic encephalomyelitis (M.E.) are not as well understood as some disabilities. But there are thousands of people out there receiving a diagnosis every day. And although the scientific knowledge of the causes behind conditions like M.E. is limited, public awareness and recognition are on the rise.
If you’re a parent who has just been diagnosed with a chronic illness such as M.E. or fibromyalgia, talking to others in your shoes is a great place to start.
We caught up with Soph, a writer at Mummying and M.E, to find out her top tips for the parent that has been newly diagnosed with a chronic illness. This is what she said.
1. Ask for help
This has to be the number one tip for parenting with chronic illness. It’s difficult to parent without people around you – so try and build a support network who can help. There are many of you out there acing single-parenting, but even if you are, help in the form of childcare, chores, or even a shoulder to cry on is essential. My daughter attends childcare, pre-lockdown of course, four days a week as even though I don’t work a traditional nine to five job, living with chronic illness is a job in itself.
2. Be honest with yourself
This is one of the hardest things to accept when living with chronic illness. I found things became much, much easier once I had accepted the limitations of my conditions. This didn’t mean “giving up” or “giving in” but purely accepting of what I now could and couldn’t do.
3. Don’t compare yourself to others
Leading on from the previous point, do not under any circumstances, compare yourself to other parents. While it is perfectly natural to do so, and I’m certainly guilty of it myself, comparing yourself to others whose circumstances are not the same as yours will only cause heartache and tears.
4. Prioritise your rest
Fatigue is a common symptom of many chronic illnesses. Fatigue is not the same as being tired all the time. Living with fatigue means you need to work out the energy expenditure of each and every part of your day. Because the amount of energy you have available is less than someone healthy, you need to ration this energy very carefully. Therefore, rest is an absolutely essential part of each day. Planning this into your day, each and every day is key.
5. Lower your standards at home
This is one I am totally guilty of not doing. It’s one I’m working on, honest. I am trying to learn that it’s not the end of the world if the dishwasher isn’t done immediately, or if the kitchen is spotless. No-one cares, and these unnecessarily high standards just consume energy that could be used for something else.
6. Don’t be afraid to explain to your child what is going on
I know many people say don’t let your child see you crying, and while there’s a limit, of course, I think children deserve to know what is going on. You can simplify a situation in order to explain it to a child in age-appropriate language, but I don’t believe in hiding an illness from a child. You will know your child best and know what they would be able to deal with, but I truly believe by having an open and honest chat about the good as well as the bad, you will be opening up a fulfilled conversation for years to come. Or I like to think anyway!
For life with my toddler, who is two years old, I simply say, “Mummy is very tired today so I’m going to need to lie down while you play”. She now comes to lie on me for a cuddle while we watch a film together during my rest time.
7. Find a hobby or activity you enjoy
Rest needs to be as calm as possible – but if you’re anything like me, your mind will race and fly between multiple different scenarios in a short period of time. Therefore, when I’m lying down, I use it as a chance to catch up on my social media work. As I’m not afraid of sharing the gory details of life with chronic illness, this doesn’t worry me.
8. Use mobility aids if you need to
At the beginning of my M.E. journey, I pushed myself through the illness, somehow believing that “giving in” meant “giving up”. I was wrong. I was making myself worse. My walking limit became 20 metres. I was no good to anyone like this. I investigated hiring an electric wheelchair and have never looked back. My powerchair allows me to parent my daughter the way I want to: taking her to the park, going shopping and meeting friends and family. It gives me the freedom and independence I simply wouldn’t have otherwise.
9. Talk to someone
I see a psychotherapist weekly and have done for the last four years. This time each week is spent processing and coping with whatever has happened that week. Whether or not you seek professional help, having someone to talk to on a regular basis is so very important. Someone that can simply listen as you process and unpack the rollercoaster of events and emotions that come with life with chronic illness.
10. And finally, be kind to yourself
You’re doing better than you think you are. You’re parenting through a battle no one wants to face and you’re acing it. Be kind to yourself. Recognise those little achievements, no matter how small. And do you know what, if CBeebies is on for your child all day, that’s totally fine too.
Sending you all love and strength,
Soph is the author of Mummying and M.E., a blog for those with chronic illness. Living with M.E. Alongside several other chronic illnesses, she writes about daily life, the good, the bad, and the downright ugly. She can be found on her website, Twitter, Instagram, Facebook and Pinterest.
If you have been diagnosed with M.E. or chronic fatigue syndrome, Decode M.E is conducting a large study to analyse the DNA from the saliva of people with M.E./CFS to see whether the disease is partially genetic and if so, what the cause might be. To find out more or be a part of the study, find out more here.