The Rejection of Chronic Illness
I’ve never experienced so much rejection so quickly and so deeply since my chronic Lyme diagnosis. That word really isn’t in my repertoire, but this therapist said to me last week, “Why do you feel there is so much rejection around you, Genevieve?” It confused me because I thought by discussing my symptoms and how hard Lyme has changed my life, it would be obvious. This was our first session, and he ended it by rejecting me as a patient because of his inability to handle my medical situation.
*Insert eye roll here*
So I dismissed everything else he said, but this word stuck with me. Rejection. Do I weave that sentiment into conversations without meaning to? Am I walking around like a big, grey rejection cloud? How can I fix this?
The answer is clear: nothing! Rejection is the name of the game with Lyme disease. You may face wall after wall, you may feel the never-ending pit of loneliness and despair while you experience the worst pain imaginable. Doctors may refuse service (so far a rheumatologist, many ER doctors, and oh yeah that therapist…). Insurance companies may refuse coverage or treatment. People may refuse your disease even exists. Loved ones may refuse to support you. Navigating rejection is how we get by. You say no. I say let’s keep on finding another way.
When I was diagnosed I was naive. I had expectations that people would rally behind me, come spend real time with me, that my social life wouldn’t change much. I would be sick, but then I would get better, and basically everything would stay the same. When that reality quickly became an absolute fantasy, I couldn’t comprehend why. Why aren’t the people who say love me here for me? Why can’t they call or text, send a card or carrier pigeon? Why am I lying on my couch so alone, afraid, and rejected?
I may differ than the average woman my age (30). I have had more close encounters with death, losing loved ones, cancer, suicide, and drug overdoses than I’d ever want to. I just lost a beautiful friend, 26 years old, to cancer a week before my diagnosis. Overdoses are tragically common where I am from, so from young age I already had many different experiences that formed my reactions and responses to a sudden death or severe illness. I was raised to respect these things and to really show up for the people struggling, as much as I can. My beautiful aunt passed from cancer, and I was lucky enough to visit for a weekend once a month. I got to be there a day before she passed in her home with her loved ones. Cancer is scary shit, downright terrifying. I couldn’t go alone the first time, but it became normal after a while. No matter what, I kept showing up and will keep those days and lessons close to my heart forever. When a great friend of mine was hit by a drunk driver and paralyzed from the waist down, I made the cross-country trip to be with him. He had given me so much when we lived in Hawaii together. He was such a gift in hard times for me back then. Seeing this beautiful, tall man now sitting in a wheelchair was rough. But it became normal fast. We traveled, laughed, lived. I worked with him to develop a personalized yoga class for him to do at home, and it showed my true calling. Supporting bodies with movement, breath and passion to heal. That trip helped me choose to go back to school for occupational therapy and dive deeper into my yoga teachings. But this is me.
So when I think of the mountain of rejection we face as Lyme Warriors on a daily basis, I’m not jaded. I’m more prepared, still hurt but ready to problem-solve. I try to not take it personally, but I’m not perfect. I try to let go of the guilt, embarrassment, and shame. To identify what I can and cannot control. To judge others less. To stop repeating thoughts of self-doubt, abandonment, isolation. To only surround myself with people who do truly love me. To grow in that garden of self-love, community, and aspirations.
I don’t know if I will ever get used to flat out rejection, but I am ready to accept my reality and what comes with it. There is nothing I can do to stop people from rejecting me. Their mind is usually made up before I have a chance. It is not my fault I have a disease, limitations and a full time job to self-care. (I have to repeat this one a lot). Discrimination is a nasty taste in the mouth, but it fuels my hunger to thrive. My fight to survive.
There is a lesson taught from one of my teachers in occupational therapy about how to reference a sick person. As OTs we were to phrase it as “a person who has Lyme disease” instead of “this Lyme-diseased person.: The separation of person and disease is so important, and I never knew how much until now.
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Image via Thinkstock – LiudmylaSupynska