“I’m so glad to see you. I didn’t think you were going to make it.”
If you’ve read my story, you may remember that is what the emergency room doctor said to me a few weeks after I had a stroke. I had only been out of the hospital for a week when I developed a rash from the seizure medication I was taking. Because it was a Friday night, my neurologist told me I needed to go to the emergency room. I cried as my in-laws drove into the parking lot of the little local hospital. It was the very same hospital that had sent me home twice before finally discovering, days later, that I had blood clots and was bleeding into my brain.
“You’re a miracle.”
One of the advantages of having a stroke at 28 is that when you return to the ER, they finally take you seriously. I was ushered into an examination room within 5 minutes of checking in. As I waited to be seen by the doctor, a nurse came in. She was very excited and a little emotional.
“Hi,” she said. “Don’t you remember me?” I did not. “I sat with you for hours when you were in here a few weeks ago.”
I immediately began to feel very guilty for not remembering this lovely woman who so obviously cared about me. She took my hand in hers. “You’re a miracle,” she said reverently.
Confused about what the appropriate response to that was, I smiled meekly and said, “Thank you?” When she left the room, I could hear her talking to people up and down the hall. “The miracle girl is here!” she said over and over.
Later, I would lay in bed, or sit on the couch, or ride in the car and wonder, “If I’m such a miracle, why am I here?” What was an enthusiastic and loving sentiment from that nurse turned into a real mindf*@k (pardon the language but there was really no phrase that worked as appropriately here) as my poor, broken brain puzzled over why I had survived.
What is Survivor’s Guilt?
Trying to understand your purpose in this world is a tough enough task. Nevermind trying do it while you’re struggling to just tie your shoes and feed yourself. I wanted to put it out of my mind and just take things one day at a time. But it was hard to do that. There is so much uncertainty during and after a health crisis like a stroke. What will my life look like now? Will it ever look like my life before? Do I want it to look like my old life? Of what kind of life am I even capable?
At the time, I wouldn’t have called it survivor’s guilt, but that may have been what I was dealing with. Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.
Though more common, or perhaps more noted, in survivors of combat and natural disasters, it can also occur in patients who have overcome a health crisis (cancer survivors, HIV/AIDs patients, etc.). It was originally identified in the 1960s in survivors of the Holocaust and since been re-categorized as a symptom of Posttraumatic Stress Disorder.
Treating the Whole Patient
Because we don’t usually think of health crises as causing PTSD, the guilt and other mental health conditions that accompany these situations are often left untreated. I was treated for my stroke physically, but not really mentally, except in the capacity that it affected my actual cognitive abilities. I was sent home from the hospital with prescriptions for blood thinners, seizure medication, and a whole host of other drugs to counteract the side effect of the other two (despite the fact that I had not exhibited any of those side effects). Yet no one asked how I was dealing with the emotional side of what happened to me.
And it’s not just stroke survivors that have trouble processing what happened to them.
“Depression is 3 times more common in patients after a heart attack than in the general population, with 15% to 20% of heart attack victims qualifying for a diagnosis of major depressive disorder, and a far greater proportion experiencing increased levels of depressive symptoms.”
According to the Lung Cancer Alliance, 63.9% of lung cancer survivors have experienced feelings of survivor guilt.
“While survivorship is often portrayed as an over-the-moon, happy feeling that all people battling cancer set as their goal, many lung cancer survivors feel burdened by it, experiencing emotions of guilt, anxiety and stress.”
Yet it seems that once the physical body is out of danger, many patients, myself included, are left on their own to unravel the emotional impact—to make sense of the new and unfamiliar life in which they find themselves. Often this process can take years.
For example, this project I’m working on is a staggering reminder that I have survived while so many haven’t. Though my stroke was 10 years ago, it is difficult to read the stories and interact with the families of the women who were killed by hormonal birth control. It brings me face to face with questions I thought I had long ago answered. Why me? Why did I live while so many others did not? And am I doing what I’m supposed to with this life?
“I really needed you.”
About a year after my stroke, I told my dear friend Jamie about what the nurse said. I told her how much it weighed on me, about the pressure I was putting on myself. Her response was beautiful and simple and a good reminder for us all. “What if you’re here because I really needed you not to die?” Mind blown. Maybe some survivors are supposed to achieve great things and change the world. Or just maybe our purpose is as subtle and as profound as being there for someone else.
That message was enough for me for a long time. But when I was contacted about working on this project, I knew there was a reason. This work is important. Women need to understand the side effects of hormonal birth control, the symptoms of a blood clot, and that their options are not just the pill or pregnancy. We need to start asking why life-threatening blood clots, emotional issues, loss of libido, weight gain, as well as many other side effects are considered “acceptable.” We need to hold the pharmaceutical companies to a higher standard. We need to value human life above corporate profit. We need to take women seriously when they discuss their medical concerns. We need to fully research women’s health issues. The entire paradigm of women’s health care and contraception needs to change. The conversation has been started. And I think I may be here to add another voice to it. The voice of a survivor.
Real Risk Study: Birth Control and Blood Clots
Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.