I would look into the mirror each day and not recognize the face staring back at me.
It wasn’t that I was getting older or that I had gained some weight, it was much more physical than that. I had searched for years for answers to my health issues and surprisingly enough, it was staring back at me in the mirror each day. I just needed the right doctor, a doctor who knew of the rare disease that I had, to diagnose me. I’ll never forget my first appointment with the doctor who finally connected all the dots. She asked me, “Have you noticed a change in your appearance?”
Me, being the vain person that I used to be, started crying, and I told her, “It seems I just keep getting uglier and uglier every day.” She then told me, “I don’t think it is you, I think it is the rare condition I suspect you to have.” We went through the checklist of symptoms: facial changes with a coarseness of features; check. Hands and feet increase in size; check. High blood pressure; check. Excessive sweating; check. Weight gain; check, Joint pain; check… just to name a few.
I never realized what that diagnosis would mean to me until recently. You see, I now run the largest non-profit organization in the world for patients with this condition: The Acromegaly Community. Acromegaly is typically caused by a hormone producing tumor next to the pituitary gland. Because the pituitary is basically the master gland of the body, this tumor affects the entire body with excessive growth. Yes, if I had had this tumor as a child, I would have been a giant. Because I have it as an adult, I do not grow in height but everything else on me has increased in size, including my internal organs. It is fatal without treatment.
So many people just see the physical transformation of the disease and do not take into account the emotional side of dealing with a hormonal condition that one has no control over.
Years ago, I helped to start a woman’s only Facebook group for females with this disease. I wanted a safe place to discuss issues that only other women who are affected with this disease could understand. I wanted to know that I was not alone in this fight to find myself again. Through this group I have found some of the finest women I could have hoped to meet. They truly do understand how we live in such a visual world where first appearances mean so much.
The disease of acromegaly increases the prejudices we face by not being the societal ideal of beautiful. The women of the acromegaly community have taught me that beauty is only skin deep, and what matters most is the person you are on the inside. I am someone who purposefully missed reunions and such because before my time in community in our group, I didn’t want people to wonder or question me about what has happened to me or my appearance. It is sad, but people with my condition deal with shame.
Now, being in the position that I am, I’m trying to rid the shame from our disease for people affected by it. When someone is affected by cancer are they ashamed of it? Usually not. We did not ask for acromegaly to affect us, it is just something that happened. It can honestly happen to anyone. I know that I will never look exactly like I did before this condition affected me, but I have worked hard to get my quality of life back. I consider myself beautiful now, and I embrace all the lessons that living with a rare condition has given me.
I have gratitude for each and every day and I tell my friends living with this condition with me, just how beautiful they are too.
About the Author: Jill Sisco is a wife of almost 20 years and mother of a 17-year-old daughter. Jill was diagnosed in 2005 with the rare condition acromegaly. She had pituitary surgery shortly after and started with medications to fight the condition in 2006. “Has the road been easy?” is a question that she asks herself. “Absolutely not,” is the answer. But she has found that with proper care and due diligence regarding her health, that she now has a life of quality versus just existing.
From Jill: For the past three years I have run the patient organization, The Acromegaly Community, which helps to educate patients and loved ones regarding this disease. We bring rare patients together in a format that years ago never existed. In our community, we have found that we are not alone and although our numbers may not be mighty, we do still matter. Patients are able to bond with other patients, and there is an understanding in our group that only another patient can comprehend. I’ve just returned from lobbying on Capitol Hill for the cause. I feel as though we are all put here for a purpose. I feel this community is my purpose, my life’s work. The community is my way of leaving a positive mark on this world. Our community spans six continents, the barriers have not deterred us, and we are all together with a common goal- a life of quality in spite of having a rare condition.
