by Mary Shomon, Your Thyroid Guide
In March of 2001, I launched an effort to send letters and emails to Oprah Winfrey, to help raise her awareness of thyroid disease and hypothyroidism. The hope was that with enough letters, Oprah and her producers would decide to mention the condition on her show, or perhaps even dedicate a program to the concerns of the millions of undiagnosed, misdiagnosed, and untreated people in the U.S. and other nations.
For background information on the Oprah Campaign, please see my Let's Raise Oprah's Awareness article.
Hundreds and hundreds of people have written wonderful letters to Oprah, and shared copies with me. These letters are funny, sad, heartwarming, angry, impassioned, resigned, hopeful -- but above all -- honest, in their sharing of what it's like to be hypothyroid. They are worthwhile reading for anyone with a thyroid condition, for practitioners treating thyroid patients, and for anyone who wants a glimpse of what it's like for thyroid patients.
Names have been omitted, and some details have been changed to protect people's privacy, but the words are unchanged. They are the words of real people, who are rising to the challenge of trying to help increase awareness of this very real -- but little recognized -- condition.
- Letter 1: "For years the doctors told me it was too much stress and I need to remove some of it. Ya, right!"
- Letter 2: "My tongue was thick and unresponsive. I was exhausted, couldn't think straight and having difficulty forming words. I had gained another 5 pounds since August so now my weight was 222. I was depressed and moody and felt like I wanted to just DIE."
- Letter 3: "There are many people who have been diagnosed with the mystery disease CFS (ME in England) who have finally been discovered to have been hypothyroid..."
- Letter 4: "I explained to him that my throat feels like it's full or swollen inside he said the thyroid would have nothing to do with that feeling!"
- Letter 5: "Potentially millions of people are walking around feeling miserable when a simple blood test could help them move toward healing."
- Letter 6: "I can absolutely guarantee you that thousands and thousands of women are suffering from symptoms that directly effect the quality of their lives unneccessarily and if they were introduced and educated to the symptoms and problems related to hypothyroidism, they would RUN to their doctors and demand to be tested and treated."
- Letter 7: "If I hadn't taken command of my health, reasearched my disease and found a doctor to help me, I would still be very ill."
- Letter 8: "For approximately 10 years I was borderine hypothyroid and considered by my general practioners to be "normal" because my TSH was around 5.01."
- Letter 9: "I can't help but think of all the people who are suffering in silence and don't even know they have a thyroid ocndition. Millions who could be living their lives for the better if only they knew..."
- Letter 10: "You truly think it is just you and find yourself feeling depressed as to why you can't be energetic, happy, sexual, and an all around joyful person."
- Letter 11: "Hypothyroidism may be labeled as a "treatable" disease BUT I am finding
that statement to be very misleading. The ramifications of this
disease
can affect and harm various areas in the body."
- Letter 12: "I had blood tests at all doctors with no results till the fourth doctor. It seems today that the majority of doctors don't go by the symptoms, just the blood results."
- Letter 13: "My husband babysat me through it all and tried to keep my spirits up,
but
the stress was getting to him as well. Everything around me took on a
dullness and I lost my energy of life altogether and he felt helpless
because he has been the sole provider of my love and happiness and I
could
no longer respond to him, it was like he was watching a shadow."
- Letter 14: "I felt I'd been transformed into a monster...
You never hear about celebrities getting hypothyroidism, and there's a
good
reason for that. Hypothyroidism disables thoroughly and socially isolates
a
person so that person can't receive help. And no celebrity diagnosed with
it
would admit to it, since the symptoms are so repulsive."
- Letter 15: "I could not understand why I was constantly gaining weight when I was continuously exercising and eating right. I am an aerobics instructor and I knew I was doing all the right things."
- Letter 16: "This illness can come on slowly and because it affects so many women at the time they think they are just aging it becomes even harder to attribute many of these symptoms to a real illness."
- Letter 17: "I wish someone would have explained to me that often times a women may experience hypothyroid as she enters menopause. I lost 18 months of my life fighting an illness that should have been easily diagnosed."
- Letter 18: "After coming home from the hospital, I couldn't drive, work, go shopping, or barely lift my head off of the pillow. I knew 'I needed to find out what was going on.'"
- Letter 19: "I thought that all of these symptoms were from STRESS!! I started feeling extremely tired. I didn't feel like I had any energy at all. I kept going. I started getting depressed. The depression gradually worsened."
- Letter 20: "It's sexist and appalling for doctors to automatically assume a woman's physical symptoms are the result of a mental disorder. It's horrible to know that the media, networks and magazines encourage the same by not publishing info about hypothyroidism."
- Letter 21: "I was lucky to find some websites after I was diagnosed that were very informative and eased my mind, when I thought that one of the side effects was me getting paranoid."
- Letter 22: "I have watched several of your shows addressing women's issues of fatigue, depression, weight gain, no energy, and not ONCE was thyroid disease mentioned as a major cause. I have struggled 5 years after having thyroid cancer to regain my mind, energy, and life."
- Letter 23: "My hair was clogging the drains, my skin was sallow, and I couldn't remember words...in the middle of lectures. Doctors told me I was 'turning forty, get used to it.'...So, please think seriously about doing a show on hypothyroidism. There are an awful lot of us out there thinking that maybe those doctors are right, and life after 40 just isn't worth bothering with."
