I went on a date this afternoon with a guy who doesn’t know that I’m sick. Mental health came up, that’s no big deal, what I mean is, Lyme never came up once, at no point in our conversations did I feel like I had to talk about Lyme, or being unwell, or how I was feeling. Of course it popped into my head when I was having trouble walking as well as when other symptoms pulled at me, however, besides those, for 2.5 hours I felt like an average person again. There was no talk about doctors and treatments and how fucked up our medical system is. No pain discussions or explaining symptoms or why I’m still not better after a year of treatment. No wondering if someone offered to do something for me out of general kindness or feeling sorry for me. No wishing someone would offer to do something for me because they can see that I’m struggling. No discussing gluten or dairy or sugar tolerance or what diet is best for Lyme patients. No explaining that the reason I’m making and selling jewelery in my spare time is because I’m making any attempt at trying to cover the cost of treatment. No one telling me that long term antibiotics will kill my stomach or my liver or my kidneys. No explaining that the long term antibiotics may hurt me but they also are the most likely treatment to get some form of my life back. No talks of vaccines or why I can no longer get them or why I’m not necessarily 100% pro-vaccine. No sorting through pills or talk of IV’s. No discussion about why I’m not currently fitness coaching or why I’ve gained weight, why I sleep so much or why I can’t workout or why I only work 4 days a week.
No one looking at me with those sad eyes, or politely trying to find a way to ask how I am. No one telling me how sorry they feel for me.
For 2.5 hours I was Denise the hairstylist, the business owner, the mental health advocate, the French bulldog mom. For 2.5 hours I wasn’t Denise, the sick girl.
On Sunday I went to an event at our cabin and I had to use a cane. I could barely walk at all. I was stiff and in pain, embarrassed and exhausted. To all of the people around me who are used to seeing me put my happy face on and swallow back the pain, my invisible illness suddenly became very visible. The way that people look at you in that situation, some with understanding, some with confusion, others with judgement or compassion or simply surprise, is awful. And when they ask me how I am I swallow the giant lump in my throat and change the subject. I do believe that the majority of people mean well, but all of the stares and the pity is an unexplainable level of discomfort that made me want to live in a cave.
I have no idea how I will approach the subject of Lyme with this new guy, I have no idea if I’ll even see him again. For tonight though, I am just so grateful to have had 2.5 hours where I didn’t feel at all like Denise, the girl with Lyme.