Aging is a natural process that brings changes in our physical health, cognitive abilities and social dynamics. Many older adults face predictable challenges such as mobility issues, chronic illnesses like diabetes or heart disease, and the need for increased medical care. There are usually widely available resources to help address these changes, like support groups and healthcare systems that cater to older people. Aging isn’t fun, but older folks and their doctors know what to expect.
Aging with a rare disease is a different story. Aging with a rare disease presents these same challenges, but unknown ones as well.
In my case, that rare disease is systemic mastocytosis (SM). Rare diseases often lack dedicated research, effective treatments and established care pathways. Individuals living with rare diseases may experience symptoms that are poorly understood by healthcare providers, leading to delayed diagnoses and limited access to the right interventions. As people with rare diseases age, their needs may become even more complex: They may need specialized medical attention and adaptive support, and that support is not always easy to find.
The loneliness of aging with mastocytosis
Social isolation can be more pronounced for those aging with a rare disease. The emotional impact of managing a rare condition alongside the typical stresses of aging can leave me anxious and lonely. There are days I sit and wonder how much of what is going on with my body is just age related, and how much is SM? Is my rare disease aging me faster than someone living without it?
I make myself get out of the house and socialize, but it is so hard.
Making plans and not knowing how you will be feeling that day is hard both mentally and physically. Some days are amazing, and other days I do not want to get out of bed. I constantly worry about how I will be in 10 years. Will I even be mobile?
My grandchildren bring me joy in my life. They are the reason that I do the best I can to stay active. I cannot do the things that I did with my own children, but I try my best to be a fun Mimi still. They make me want to enjoy life. They keep me going.
But just like my children, one day they will grow up. When that happens, I will be lonely.
I watched my father become isolated as he fought Parkinson’s disease. This was so sad. A visit from his children and grandchildren brought him so much joy. Even on our phone calls you could hear how happy he sounded.
Eventually, he just lived in the past. Not in the present. Reminiscing about the good old days when he could do what he loved and spend time with all the loved ones that had already gone.
I do not want to be like that. I want to use what he went through to make me fight harder.
Fighting against the isolation
This is why I do all that I can for patient advocacy. I am still in the learning process, and hope that one day I can do more to help everyone living with rare diseases. I am taking classes and sitting in on monthly Zoom calls about advocacy. I participate in events when I am able. I write about my life. I speak at events when invited.
Advocacy efforts and rare disease organizations are working to bridge the gaps in care and support. By increasing awareness and fostering collaboration among healthcare professionals, policymakers and patient communities, the goal is to improve quality of life and ensure that aging with a rare disease is not an isolating journey, but one supported by compassion and tailored care.
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