I spent every day of the 2012 summer working as a door to door salesperson. The state of Wisconsin hadn’t had a summer that hot in two decades. By the end of those three months, my hair was honey gold from sun exposure. A lanyard tan hung about my neck like delicate noose.
Door to sales is a game of constant optimism in the face of constant rejection. Most people will say no to you, usually in painful ways. They assume you’re a terrible person. They hate you because you’re standing on their porch. They think you’re a nosey jerk who’s trying to steal their money. The sound of rejection is the KA-DONG! of little yap-yap dogs banging their heads on a glass door, teeth bared in hostility. “Begone! Begone! Begone!” I learned to take a certain amount of joy in the way they fell off to the side of the door and then pretended they hadn’t fallen.
Experiencing this kind of rejection actually set me up to recognize what often happens to people with chronic illness. While the sentiments and responses are not exactly the same, (people never threw me out of a house for claiming to have Lyme), the sound of rejection is still in the subtext.
I tried to explain my illness to a family friend once. I told him about my many different symptoms: brain fog, aching joints, insomnia, panic attacks, anxiety, crippling depression, fevers, unending colds, and strange coughing fits.
“But, Rachel, don’t you think all of that could be psychosomatic?” he asked. He said it with concern, as though he was suggesting something I should have heard and taken into account a long time ago.
“I was experiencing a great deal of personal success at the time, so no, I don’t.” I tried to explain to him that I had a lot of friends who had been supporting me, that I had done a lot of counseling work, that I loved my jobs and was not experiencing any amount of stress that was not manageable. “I still had those symptoms, and they got worse, so I went to see a Lyme doctor and he diagnosed me as having Lyme, and a lot of other things.”
“Ah, but a lot of that could still just be in your head,” he said.
KA-DONG! I was standing in front of him pale, exhausted, and very thin. He still rejected my diagnosis by a leading Lyme researcher and doctor.
I spent time with a friend a while ago who also had Lyme. We were trying to explain to her roommate about our symptoms and diagnosis because we had very similar stories.
“Oh, this is caused by stress. It is in your mind,” the roommate said.
I nodded, ready to explain. “Well, stress can definitely make it all a lot worse, yes-
“No, this is in your mind,” she insisted. “It is something you are calling Lyme, but it isn’t that. In this culture, this American culture, everyone thinks they are sick, but it is just stress.”
KA-DONG! She thought it was psychosomatic, too. My own experience was overlooked because her degree and life experience could not support its existence.
I realize this a complex issue, and that a lot of people can and do misdiagnosis themselves. However, by and large, my experience and what I’ve read consistently shows that people reject those with Lyme, even those diagnosed by several specialists, as being crazy, or even dramatic because there is so little public understanding of it. I have to confess to being jealous of cancer patients over the past few years because people acknowledge their illness and know to some extent what it looks like. They understand and are kind when the cancer patient is tired. We have a ton of cultural understanding surrounding cancer, but nowhere near the same level when it comes to Lyme or many other chronic illnesses.
When I think about the rejection my friends with chronic illness face, I am prone to settle into despair and frustration. I have to remind myself that excellence is what I should strive for in doing research, in explaining how Lyme affects the body, and in discussing my diet and supplement decisions in the firm belief that my friends and I know what we are experiencing and can fight it together. Spoonies, unite. We can help people understand chronic illness, and they’re going to need us as Lyme disease and other maladies spread.