Dear chronic illness,
When you arrived in my life you brought with you so many emotions. It felt as though the life I had always pictured was slipping through my fingers. Things would be different now. Slowly, over time, I came to accept you in my life and I adjusted. But every now and then I find myself dwelling on the same fears that plagued me in the beginning. I’m going to share these openly for the first time.
1. What if I can’t be a good mother?
This is a huge one for me. It’s the one that hits me the hardest. I don’t have kids right now but they’re definitely in my future plans. I always pictured being an active mum, running and playing with my kids. Now I experience thoughts like “what if I can’t even pick up my baby because I’m having a flare and I’m too weak?”. Not only do I fear that I won’t be able to be such a hands-on mum, I worry that my children won’t understand – because why would children understand?
The rational part of me says a number of things. Firstly, stop worrying about what your hypothetical children might hypothetically think. There are other things to worry about that are actually real! Secondly, show me a perfect parent who is well 100% of the time and is able to do absolutely everything their children want. Even if this person does exist their children are probably spoilt and impatient.
2. It’s inevitable that everyone will grow tired of me
I can feel like a burden to others and be very down on myself. Fibromyalgia, you have made me unreliable. A person who cancels on their friend at short notice. Someone who cannot always pull their weight at home with the chores. Sure people are understanding, but there’ll come a time when their patience wears thin right?
I’m telling myself this is wrong. Sure people might get annoyed from time to time. Who wouldn’t if they’ve been let down? But anyone worth their salt will recognise that it’s not your fault and they won’t resent you. They’ll want to help. They’ll be open to compromise if it’s not your best day. And if they’re not, they’re probably not worth you worrying about.
3. What if I never dance again?
This is a very niche worry, but I’m betting a lot of people have their own version of this worry. I’ve always been a dancer and love the rhythm of music. Dancing has always allowed me to let go, have fun and express myself. I was once told that when I dance on a stage my eyes sparkle (I’m realising as I write this that they didn’t actually complement my dance moves!). Now because of my fibromyalgia I don’t dance as it puts too much strain on my body. It’s like losing a big part of me and a big part of my joy.
I suppose in the future I may be able to try again but I’m not sure how hopeful I am about that. Perhaps I need to think about finding new hobbies that fit with my abilities.
4. What else will you take from me?
I love to write, to think, to learn. I particularly love my job which encompasses all of these things. I’d like to return to study one day and do a PhD. Maybe write a book. But might there be a day when chronic illness starts to take these things from me?
When I get ‘fibro fog’ I find this takes such an emotional toll because I feel like I’m losing myself. Who am I without these things? When so much has had to change, it’s hard sometimes not to think about what else might change in the future. But I will always be me 🙂
So, what’s next
Perhaps someone will come across this open letter and know it’s ok to be afraid. Any life is a series of unknowns. A series of hurdles to navigate .
I’ve had to come to accept that life might be different to what I pictured. Sometimes I get a little down about this but mostly I think it’s ok. For example, it forces me to explore new areas of life I might enjoy that I might never have considered if dancing had remained my sole passion.
So if your feeling afraid, face your new life head on with courage and open mind. You might be surprised at what you find.