We usually write about our experiences while caring for patients with malignant mesothelioma. As always I cannot remember when I left a patient and didn’t have a new respect for how patients with rare diseases like mesothelioma deal with the impact on their lives. Today I read an article about a woman who had been stripped of her job, hobbies, and her life as she knew it by a rare disease other than malignant mesothelioma.
The unique perspective of rare diseases has always fascinated me – how do people learn to live with their new normal? Some people make it look easier than others as many adapt to their new way of life. A rare disease is defined as one that affects fewer than 200,000 people across a broad range of possible disorders. Mesothelioma is a rare disease that affects roughly 3,000 cases per year. In the United States there are over 7,000 rare diseases that affect more than 30 million Americans.
Malignant mesothelioma changes daily life for both individuals and families. It can send them into depression and fill the individual and their loved ones with fear. This particular article spoke about how a woman learned photography to document her journey with the disease, her feelings, and to have a visual timeline. Through her foundation she is sharing how she is adopting her hobby of photography to share with others who are going through similar situations. Documenting her struggles and strengths has been rewarding to her own self-esteem and to others who are experiencing similar situations.
When life throws a curveball like mesothelioma it forces most to re-evaluate life and how you will cope with your new rare illness. Most people that we have met handle it with grace and dignity. Some are able to speak freely about their journey where others are not sure how to express what they are going through. Some people keep journals, while others reach out to other survivors, and some take up a new idea that they think will help themselves down this new road. These are just a few examples on how people deal with a rare disease. Some may take up photography or drawing or possibly walking.
If you continue to struggle there are many organizations that can help. One organization that I would like to mention would be NORD, the National Organization for Rare Diseases. There are many tools and resources available that may help you cope with your disease. You may have a rare disease but you are never alone. Feel free to reach out to mesothelioma programs or a member of the team like myself here at Mesothelioma Help Organization.