What would you do if you lived with a life-threatening illness? Maybe you already do.
Meet Kathryn Chastain Treat, a survivor of a horrific illness that often keeps her isolated from the outside world.As a loyal follower of the Lipreading Mom blog, Kathryn’s story parallels the newly diagnosed hearing loss experience: the fear and uncertainty of what lies ahead. Her new book, Allergic to Life, tells the story of what she learned from those moments of uncertainty.
Lipreading Mom recently interviewed Kathryn via email.
What is your personal experience with invisible illness?
My personal experience with invisible illness is through my acute chemical and mold sensitivities. I look like your average middle-aged woman who has chosen to not color her hair, wear make-up and doesn’t care about the latest fashion trends. From the outside you cannot tell that fungi and mycotoxins live in my body. From the outside you can’t tell that the slightest exposure to perfumes or cleaning products will send my body into extreme fits of coughing, gasping for air, and cause brain fog or disorientation. From the outside you cannot know that contact with mold will leave me unable to think or communicate and send my body into severe tremors.
My mold exposure at work caused an immune system meltdown where my body thinks most things are its enemy and acts accordingly.
How did writing this book help you cope with the illness?
Writing my book has helped me in many ways. Writing forced me to relive all my horrible experiences and to read my journals where I shared my most heartfelt worries, pain, and fear. Reading those journals took me as an outsider looking in and reminded me of the pain I had endured both physically and emotionally and was a measure of how far I have come. Writing my story began helping me put my demons aside, to begin to step outside the victim role, and to find joy in what I was still able to do. Writing this book has given me a voice as not only my own health advocate but as an advocate and voice of other suffering.
What advice do you have for individuals living with ‘invisible diagnoses’ such as hearing loss?
My advice for others living with an invisible diagnosis is to seek knowledgeable and understanding medical care. If a doctor is not supportive, move on and keep looking. I recommend researching. Knowledge is power and allows the individual to understand more about their diagnosis and what treatment options are available. As part of my research I found a support for aspergillus in the UK. Suddenly there was someone across the world that had what I had and understood what I was talking about. Find your voice! In finding your voice, you can become and advocate for yourself and others.
Finally my advice is to give you the same kind of love and compassion you would give someone else who is suffering. The biggest and worst thing we can do is to beat ourselves up about the loss of hearing, the loss of being able to go out in public, the loss of mobility, etc. Find something that you enjoy (no matter how small) and take joy in doing it.
What brings a smile to your face? Makes you laugh?
Seeing my grandchildren running and playing and laughing brings a smile to my face. There was a time that I didn’t think I would survive another day or enjoy the wonders of being a grandmother.
Old movies and books can make me laugh. Talking to friends about the silliness of life can make me laugh and reliving some of the funnier things that have happened to me since becoming ill can still make me laugh. I think the greatest laughter is listening to my granddaughters try to tell me a story or sing a song when the words are all wrong. My four-year-old granddaughter recently wanted to choose between doing two different things. Her song was Eenie meanie pinie pose, catch a tiger in a pose, I choose this one. It had me laughing for a long time and still does when I say it to myself.
Readers can find out more about my book by going to my website. My website has pictures, some information about the book, links to my blog, my Facebook page, and other social media. My website also has links to purchase my book on both Amazon and Barnes and Noble as well as a link to purchase a signed copy (U.S. only) using Paypal.
Readers—Win a Copy of Allergic to Life
Click here to enter for a copy of Kathryn’s book. Three copies will be given away. Hurry! Giveaway ends very soon.