“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.”
What do you remember from your experience with Hodgkin lymphoma?
My capacity for denial was powerful and complex. As a young adult with a history of “Hodgkin’s disease,” as we used to call it, I vowed never to tell anyone, especially once my treatment 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.
Did you find a way to adjust?
Most of us learned early on what it was like to be pitied or avoided. 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, 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 40 years would be like?
Did you meet others who had been diagnosed with Hodgkin lymphoma?
At Strong Memorial Hospital in Rochester, I met another teenage girl, but we never kept contact afterwards. At college, I met one other young woman; we are in touch, and she is thriving. Aside from that, I never met another survivor of Hodgkin’s until well into my adult life.
Once you are an adult, 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.
Can you describe the late effects you’ve experienced?
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. As I would discover, late effects of radiation do not go away; they might even become more intense over time. When I began to experience some of the late 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.
You’ve had to manage what you would tell people.
Yes, and both my broader social circles and my professional world would become a different story. More than 30 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 were the gaps in my professional resume. I would rather make things up than admit that I was in the hospital or recovering from surgery! I usually summarize: “I’m in pretty good shape for the shape I’m in.”
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.)
What are your final thoughts about life as a Hodgkin lymphoma survivor now?
For a long-term survivor of mantle radiation therapy and other treatments for Hodgkin’s, the complications and considerations are 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 public place? And what could be more public than the internet? “Going public” is a highly personal decision that cannot 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.