Despite Our Differences, the Rare Disease Community Is in This Together
Coping with a rare disease can be lonely. After I was diagnosed with lymphocytic interstitial pneumonia (LIP) in 2019, my world crumbled and shock set in. I started searching for answers on the internet, looking for any research about my illness, and talking with other patients.
It’s a comfort to find a community of people experiencing the same health issues. It’s a relief to know you’re not alone. When others are traveling the same path, they share your fears, concerns, and worries. The only difference is experience. Some have dealt with their illness for many years while others, like me, are recently diagnosed.
Because I’ve had LIP for only a few years, some have said that I don’t yet know what it’s like to live with a rare disease. It would be logical to feel offended, but I’m not. I’m mostly hurt by those words, especially because I do have a rare disease, even if I haven’t lived with it for very long.
I certainly can understand people experiencing anger, trauma, pain, and resentment toward their illness, but aren’t we all in this together? Our community has one common opponent: our disease.
I do, at times, feel some guilt that I have been able to enjoy most of my life illness-free while others have not. I wish I could take their pain away. We can’t change the way our lives have been written, but we can use our experiences, whatever they may be, to help others cope.
When I hear from young people struggling with a rare illness, I immediately experience that wave of guilt. Why do they have to deal with such a life? I wish magic really did exist. I wish a fairy godmother could wave her wand and release them from their sickness.
My diagnosis came as a surprise to me. I expected to run into health issues as I got older, due to the genetic issues that have plagued my family, but I never expected to contend with a rare disease.
My illness hit late in my life, and while it’s true that I don’t understand what it’s like to grow up with a disease, I am still living with one today.
Mine is a rare, incurable illness. An illness that prevents me from fulfilling my potential. An illness that keeps me on oxygen 24 hours a day. An illness that, at times, makes me exhausted and unable to complete a task. An illness that put a stop to my career.
Living with LIP is isolating and creates obstacles I never thought I’d face. Doctors have little knowledge of the disease, and I have yet to find an organization for people who have been diagnosed with it. It’s hard to find research, approved treatments, and medical funds, and awareness is severely lacking.
Being part of a community helps those of us struggling with rare illnesses to feel less isolated and alone.
According to a study published in 2020 in the journal Health Psychology, people with rare diseases are more likely to experience depression and anxiety than people with more common diseases.
As study co-author and Oregon State University researcher Kathleen Bogart told news writer Molly Rosbach of the same university, “Just being rare invites in a whole other set of challenges that we think most people with any sort of rare disorder experience.” Rosbach noted that these challenges may include stigma, psychological distress, and difficulty obtaining treatment.
No one should feel stigmatized or anguished due to a rare disease. We all need emotional support and reassurance. Support groups can play that role in our lives. They should be able to help the newly diagnosed cope.
As Brad Dell, my friend and the director of columns at BioNews (the publisher of this site), once said, “We have different experiences, but they both suck. Solidarity heals, not division.”
It’s important to feel validated. It’s the rare disease community’s responsibility to empower and inspire one another. We are all in this together, no matter our illness or experience.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.