23 Years of Remission: A Cushing’s Patient Shares Their Story
Sharmyn McGraw, a patient advocate at Pacific Neuroscience Institute, reflects on 23 years of Cushing’s remission after treatment at the Pituitary Disorders Center. Learn more about PNI’s Pituitary Patient Support Group, the longest-running support group of its kind in the country, which celebrates 22 years of providing patient support and education.
April 14, 2000. That’s the day, my neurosurgeon, Daniel Kelly, MD, at Pacific Neuroscience Institute, removed the tiny ACTH overproducing tumor in my pituitary gland. That’s the day, every year since, I celebrate being in remission.
The road to recovery and taking back your life for most Cushing’s patients can be challenging, and mine was no exception. My twenty-three years in remission from Cushing’s disease hasn’t been a smooth journey without bumps. But I’m one of the lucky Cushing’s patients. I got to pituitary experts. My surgery was successful, and I’ve had the blessing of helping so many other Cushing disease patients. Looking back, I would not change a thing.
However, that’s not where my story begins or ends. Over the years, I’ve met thousands of pituitary patients. I’ve got many wonderful, positive stories of patients that have moved past Cushing’s diagnosis and are living a full life. But dealing with the number of patients I’ve helped over the years, sadly, I have just as many stories of the tragedies of living with an illness.
As a patient advocate, I’ve always felt it’s my job to reiterate how we lack education in our medical communities, public awareness, and understanding of what patients go through, but we are making strides. In the past twenty-three years, I am proud to be part of the efforts to improve all these things we’ve lacked for the well-being of pituitary patients. But through the years, I have seen too many patients unable to move past the effects of the disease, even after hormone levels are within normal range. There are many reasons why this is. However, I find the biggest missing link is the lack of focus on the patients’ mental health.
Humans are complicated beings. And to add to it, when we get a concerning diagnosis and/or experience symptoms of an illness that has yet to be diagnosed, we deal with these things based on our ability to cope with life.
Growing up, I was taught to go to a doctor when you’re sick. They will know what’s wrong and give you a cure. Unfortunately, that’s not the reality for many pituitary patients. After all the medical professionals missed my diagnosis for more than seven years, I lost trust in our medical community. My world felt unsafe, and I felt unsupported. I felt unheard and misunderstood. My appearance had changed so drastically, I didn’t see myself when I looked in the mirror. Having gained over 100 pounds, I felt disregarded by society, and I felt judged even by some friends and family members.
Somehow, I found the strength through the years to continue my employment while dealing with the symptoms of undiagnosed Cushing’s disease. I needed medical insurance, so the fear of losing my job kept me focused on working. It took everything I had to keep going, mentally and physically. Seclusion was where I felt best. I stopped socializing because being alone kept me from feeling like people were blaming me for my laundry list of health problems. Going from an active and physically fit petite dress size 2 to an obese size 22, barely able to walk upstairs was shocking for me and the people who knew me. I couldn’t bear another friend suggesting a new exercise program or diet they’d read about. I couldn’t take one more doctor accusing me of overeating and lacking exercise. I was already ashamed of my appearance and my poor health. I just couldn’t take seeing the look of surprise and concern on their faces as more weight would pile on me.
Searching for another doctor with the hope they would be the one to figure out what was wrong with me eventually took a toll on my once happy, charismatic personality. I’d nearly lost hope, but then I met my endocrinologist, Pejman Cohan, MD, and my neurosurgeon Dr. Daniel Kelly. Thinking about the dark state of mind I was in at that time, meeting these two Cushing disease experts saved my life.
Removing the tumor that had caused so much havoc on my quality of life was one piece of recovery. Having a fully functional pituitary gland was another piece of recovery. But I had been sick for so long, dealing with health problems became who I was. Illness had become my normal, and on April 14th, 2000, I had to figure out who I was, without being a Cushing’s patient. And although I was overwhelmed with gratitude for my new life without Cushing’s, I was scared and had no idea how to start putting my life back together.
The first thing I decided was to help other patients. This was a huge part of my recovery. I focused on doing everything I could to focus on living my life again, so I could inspire others to live theirs again too. I have been fortunate to have enormous support from, Dr. Kelly and Dr. Cohan. I am blessed to have wonderful loving friends and family that helped my mental health. But I had to do and I still do a lot of work with my therapist.
When I suggest to a patient they see a therapist or a counselor, many patients argue, “I don’t know how to find a therapist who understands Cushing’s disease.” And many patients don’t understand when I explain, a therapist doesn’t need to understand your disease. They are well-trained in getting to the root cause of all that comes with the diagnosis of an illness.
Pituitary diseases are not just a prolonged diagnosis. It is the feeling of being misunderstood, not being heard, fear of never getting better, and so many other issues. This is only one part of the complications of living life. Patients come to this disease with a lifetime of issues; an unstable childhood, financial issues, concern for family members, failed and/or failing relationships, and so many other parts of normal life. But what I see is hurting many patients to move past the pituitary tumor diagnosis is that they aren’t equipped to deal with all the problems in their life before they got sick. That takes a professional to help sort out what is past trauma and what is from the disease. But how do you heal one thing, and then another, and keep from clumping everything into a Cushing’s diagnosis?
So often I see the burden this disease causes caregivers and children whose parents are sick. This is too much for the family. There needs to be a mental health professional to help support the patient.
I feel mental health is as important with Cushing’s patients as any other part of proper treatment. I hope this is a topic that becomes standard care and is soon part of the curriculum taught to medical professionals. I believe this is an imperative part of patient care and a tool much needed to improve a patient’s quality of life.
I’m blessed and grateful to be part of the PNI Team, and I’m forever grateful to my dearest friends, Dr. Kelly and Dr. Cohan for 23 years of remission and friendship.
Santa Monica: 310-582-7450
Burbank: 818-847-6049
Torrance: 424-212-5361
PacificPituitary.org
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Last updated: April 4th, 2023