Mental Health in Rare Disease is a Personal Journey
Mental Health in Rare Disease is a Personal Journey
Whatever someone's situation regarding a rare disease, the one thing I feel we all have in common is that it is life changing for us all. This is true whether patient or caregiver, newly diagnosed or long-time patient. We learn early on that it is important to give yourself time to the diagnosis and seek as much support as possible while you come to terms with your new life.
My journey starts really with my mother who was diagnosed with Cowden disease. A year before she passed away she gave me a letter to give to the doctors should I want to get tested for the same condition as her. At the time, I remember thinking I felt ok. Many of us patients struggle with a bit of denial. I had none of the symptoms she had experienced. Furthermore, there was also a sense of denial about my mother’s declining health and my being unable to do anything for her.
After she passed away I decided to get tested. I was given great support from the doctor and genetics counselor who went through the implications of me getting tested. It is important to note that this was my decision. I got tested and was found to be a carrier of the same condition that my mother had. At the time It felt like a big blow as I was still grieving her. I felt frightened, angry, lost, uncertain and alone with this condition.
I think at the time I didn't give myself enough time to adjust to the diagnosis. It didn't take me long to reach out to the online support groups to understand and connect with the community around my rare disease. I remember in the early days someone said if you can accept you have a rare condition that was half the battle. This acceptance gave me a sense of control in my life. I also wanted to support other people in the community, feeling that I couldn't do anything for my mother but there were others that needed support.
“A group like this helps us realize we have common struggles. We have an automatic bond and feel quite comfortable talking to one another.” Matt
The community part of our individual personal journey is really important. Finding others who get it have helped me define who I am now and how to manage my new life with my rare disease. I have met some of the best people on my journey who have made a big difference to me. There is hope moving forward and despite challenges along the way I have never given up on that!
We hope you will join us next time as we dig deeper into Rare Men’s Mental Health on April 19th: https://us02web.zoom.us/s/82341895100
David Ross, Rare patient, Advocate
