As a young adult with a history of “Hodgkin’s Disease,” as we called it then, I vowed never to tell anyone about it, especially once it was over. Never- under any circumstances. But that vow became harder to keep each passing year as the side effects and late effects nudged or barged their way into my life. I gradually accepted that it could never be over.
Most of us learned early on what it was like to be pitied or avoided because it was just too uncomfortable for some people to be around “that teenager with cancer.” We were told how lucky we were to be alive, miraculously saved by what seemed like over-treatment by the medical system. At the time, we walked around with radiation burns and bald spots, and the hideous scars of surgery. Soon, our long swan necks were the only pretty “side effect.” Little did we know there were other side effects. We walked alone, because none of us knew any of our Hodgkin’s cohorts back then. Venturing into college life the year after my treatment was completed, I certainly did not want to tell any of my new acquaintances about the experience. I didn’t even want to remember it myself.
On the edge of adulthood, how could I know what the next forty years would be like? I never met another survivor of Hodgkin’s until well into my adult life. Late effects can be many and varied. I’ve often had to do my own research and then tell my doctors what to look for, so it’s no wonder that we are misunderstood. Who wants to have to explain to their hair stylist why the back of her head is bald? Who wants to explain to colleagues or students why you are not donating blood at the blood bank? Who wants to alarm fellow skiers, cyclists and kayakers to possible troubles when you are all out to have a fun day? Who wants to say that they have a damaged heart, but even if it acts up, we don’t know for sure what it will look like? Is it better to keep quiet and hope for the best? Maybe.
As I would discover, late effects of radiation do not go away- they increase and become more intense over time. When I began to experience some of the late term effects (secondary cancers, heart disease, lung issues, and Radiation Fibrosis Syndrome,) there was much uncertainty, even in the doctor’s office. So, as a Hodgkin’s survivor, what should I tell friends, family, and co-workers about my (several) chronic conditions? I learned little by little how and when to tell close friends and potential partners, often by trial and error. Since we were pioneers in surviving the disease as well as the treatment, there was little information available. Nobody really knew what would happen.
Both my broader social circles and my professional world would become a different story. More than thirty years after the initial treatment, I found it awkward and sensitive to explain in an “elevator speech” how I happened to need surgery for breast cancer, heart disease, and thyroid disease, all within a four year span. Even more difficult to explain was the gaps in my professional resume. I would rather lie, saying that I was incarcerated than admit that I was in the hospital or recovering from surgery! I had many reasons for wanting to keep my health history private. Like everyone else, I wanted to be effective in my professional life and respected in the workplace. I didn’t want my superiors OR my subordinates to question whether or not I had the physical capacity to do my job. Add to that the fact that access to health insurance is often tied to employment, and you have yet another reason to keep things secret. (Consider that the “Americans with Disabilities Act” does not cover a person until she/he has been on the job for a year.)
For a long term survivor of mantle radiation therapy and other treatments for Hodgkin’s, the complications and considerations are many and extensive. Information shared through a blog may help others who find themselves in the same boat, but what about the possible repercussions of posting this particular information in a pubic place? And what could be more public than the internet? “Going Public” is a highly personal decision that can not be reversed. Yet going public is the ONLY way we can connect with each other, share our successes, inform our doctors, and advocate for access to the research and clinical care we need in order to keep thriving.