“It’s funny to say grief as it is not a bereavement but you kind of are grieving the loss of the child you thought you had and the future they had.”
Lizzie Deeble articulates the emotions many feel after receiving a rare diagnosis such as Duchenne muscular dystrophy for a loved one. Her older son was diagnosed with the condition at 18 months. She had brought him to see his GP when she noticed he wasn’t developing at the rate of a typical child. The diagnosis changed everything for her family.
She explains the complex emotions she feels as ongoing. It’s not something you can really move on from because it confronts you every day as you interact with your child or your loved one.
She articulates that as a mother you’re supposed to be watching your child progress, pass milestones, and grow into an independent adult. Instead, she is faced with the contrary. Her son is only four years old, but she is fully aware of his prognosis. The life expectancy for those with Duchenne muscular dystrophy is only the mid 20s. As he grows, she knows she can only expect his condition to worsen.
The only treatment currently available for this disease is steroids. These can help reduce inflammation and improve muscle function but they’re not a cure.
Lizzie brings to light the lack of support that many rare disease families face. Since it’s a very specialized form of grief, it requires a very specialized form of support. Unfortunately, Lizzie herself was offered no psychological services following the diagnosis, despite having a very kind and attentive GP. The problem is, because muscular dystrophy is a rare condition, there aren’t many people out there who understand what life with the condition is like, and therefore there aren’t many people who can provide adequate support.
This is an issue too many rare disease families face. But it doesn’t have to be like this.
What we can do
Yes, rare conditions are rare. But as a whole, rare conditions affect millions of individuals and families worldwide. There is support out there, such as other families going through similar experiences, professional psychological services, and support groups. The biggest issue is connecting the people who need support to these various outlets.
It all comes down to a need for greater communication. With this, we can work to more widely publicize available services and get families the support they need.
There are resources out there for rare parents, caregivers, and patients themselves, but we need to improve their accessibility. Grief is normal, but there are things to help you cope.
You can read more about Lizzie’s story and her opinion on grief with diagnosis here.