An Open Letter To My Charcot Marie Tooth Disease
Writing for me has always been a really great way to process my feelings around my chronic conditions and diagnoses’. Cathartic, cleansing, curative even.
One exercise that I often do with clients is to encourage them to write a letter to their condition. To get it all out on to paper, perhaps in a journal. It can help us manage stress by understanding what’s going on in our minds. Sometimes we feel anxious about things or we’re feeling upset and sad.
Writing something down can be a healthy and intimate way to deal with your emotions about your condition and what that means. It can help you reflect back and see how far you have come and the skills that you have gained, the support that you have around you and the positive choices that you have made while managing your health needs.
It also makes it easier to see possibilities and choices going forwards.
Some reflection questions
What have I learned?
Who are my people?
Given the current circumstances, what will serve me best now?
What actionable steps can I take from this place to move me forward?
Today I am sharing a letter I wrote specifically to my neuromuscular condition Charcot Marie Tooth Disease.
When you first came into my life it was hard. Those were the darkest and longest two years of my life. I got up every morning and got on with the day to day but inside I was crying. The words progressive, neurological, hereditary, they shook me to my core. Questions spiralled around my mind; Why me? What would it mean for the future? For my little boy? Would I be able to have more children? Would it be fair to try?
In the beginning you stole my career. I couldn’t manage to work. I would dislocate as the bed covers lightly brushed across my knee, I couldn’t walk on grass without falling and having more dislocations, you made family days out impossible, you made life hard. You put me through two surgeries in a very short space of time and I was told that I would be a wheelchair user by my mid 30’s. Not solely your fault I know now that EDS had a part to play too but I didn’t know her name so you bore the brunt. It was tough.
I kept smiling on the outside but I inside I hated you.
We explored all of the options for expanding our family, we thought about adoption, considered an egg donor but preimplantation genetic diagnosis was the closest that we came to seriously considering a plan other than Mother Nature, but who are you to make our choice.
Two years after I first learnt your name our second baby came into the world, naturally. We were happy. I was meant to be a mother and it felt good. You weren’t done though we’re you? Making me go through major surgery with a young baby and a toddler. This time I never let it get me down, you weren’t going to beat me anymore, I had decided that I was going to win the fight.
So I researched all about you, I called your bluff. I took advice from the experts and I got stronger physically. I fell in love with Pilates. Learnt to to love Physiotherapy and slowly began to walk a little every day.
Strength for me wasn’t just a physical pursuit it came from within.
As time passed you have taught me so much. have taught me perseverance and patience, when things are tough they will improve. You have taught me think out of the box and find solutions when problems present themselves, the rewards can be so much more when you work harder for something. You have taught me to value what is dear to me and treasure it with all of my heart. And you have taught me not to judge others because you never know their story. Self compassion has become my medicine. You have made me a better person.
You weren’t done with us though we’re you? You didn’t want to give us a break? When our daughter was born it was obvious that you were part of her too. We were formally told after she had to endure painful Nerve Conduction Studies just before she was two. This time I didn’t hate you but you made me sad. So sad that I couldn’t speak for a week, so sad that the food just went round and round in my mouth till I finally swallowed it down.
Then EDS formally came into the picture too, I didn’t grieve this time, you had taught me to cope. Our beautiful, determined daughter had taught us joy, we knew how to paint our own rainbows, we are a unit, strong, together and we are armed.
We understand what we are dealing with so we can prepare for her future. We won’t let you catch her unawares in her 20’s. We can fight your symptoms because we know the damage that you can do first hand. She will be her strongest best self.
You have taught me to fight for that care for her, for all of us, to practice gratitude, to negotiate, to say thank you when people do their jobs well, to be assertive when they don’t, to learn the law, our rights.
You have taught me that strength does not mean that I have to fight every day, fighting just adds another layer of resistance that makes everything harder. My strength is deep within me now. A knowing. A heartbeat. My strength also comes from being vulnerable and letting my guard down, without you I may not have learned that was safe. My vulnerabilities are so welcome now.
I am empowered.
I thank you for that.
You have also taught me to give back. I have been on a journey through diagnosis to the point where I am now and I survived. I am in a much better place physically, mentally and emotionally than before I ever knew your name, you have triggered that change in me. I am stronger. I am thriving… even with you in my life. I now use this to help others who may just be at the start of their journey, perhaps with a condition that has come into their world or when one of life’s storms have hit and it has knocked the wind from their sails. Because we are all stronger together.
Like any relationship I have got to know you and that has been key to living well with you. But most importantly I now know myself : what I love, what I value, what brings me joy, who I adore, whose energy I love to be around and what I want for my future.
I can’t change my condition but the choices and decisions around the rest of my life are mine, I get to choose how I react to the situations around my health. That power is mine and you can not take that away. My focus is not on what I can’t do but what I can and how I can adapt things to be able to still take part, if I want to. My out of the box thinking has expanded ten fold – and I love that you have given that to me.
I’m sure that you will always try to test the boundaries but I am prepared for our future together.
Bring it on.
DO YOU WANT TO BE PART OF A COMMUNITY WHERE YOU FEEL SEEN AND HEARD?
Join the Chronically Empowered Women Facebook Group. It is a safe place for women with long term, chronic illness or disability (or if your life has been touched by a chronic health condition, perhaps you are a carer or mum to a person with health issues!)
It is a space to be you, to be honest that you want more than this, to be honest about not knowing how to start. A place where we can lift each other up and support each other.
Where you can share your story and where we can inspire each other with our wins.
It’s about understanding that life can be tough but also that we can do hard things. And, about recognising your own unique superpowers!
If you are curious about coaching, please fill out the contact form and I will be in touch.