Hello. Yes, I have Lyme disease. No, I will not be posting about it all month – even though this is Lyme Awareness month.
What I will be doing instead is using Facebook and the web to distract me from the hell that is Lyme since ALL Lyme treatment is out of pocket and my pockets are empty, since Facebook advocacy does not work (Several documented media studies on this, the least of the issues is confirmation bias), since NO ONE ever gives to my Go Fund Me other than my four or five remaining friends (Sadly, this is true for lots of Lymies – see statistics on our poverty rates), and since I always get nasty and cynical in May.
I was born in May and I have not had the means or inclination to celebrate a “normal” birthday in over 20 years. I spend my birthdays like every other day of my years, with no money, severe food allergies, no health insurance, and having to tell myself (again and again) now I just need to try to live long enough to make it to my next birthday.
If this post bothers you, hide it. I am done apologizing for things I cannot control. It is not my fault I got sick and that I cannot seem to get better. It is not my fault that the AMA does not recognize Lyme as a real disease. Not my fault that insurance DOES NOT cover Lyme treatments or that there are only a handful of doctors who try to treat Lyme. Or that the treatments are painful and have terrible side effects.
And as for my “negative attitude” well, despite all the rah-rah-rah posts, I know that I am NOT the only Lymie to feel this way. And I just feel anxious and sometimes depressed. Sometimes angry. Usually, I just feel tired. Or like I have the flu. But as a group, well, check out our suicide rates sometime. We die young…and if the disease does not get us, the constant denials of our situation leads to a frenzied depression that usually does.
If you want more info, then ask me and I’ll refer you to some Lyme disease patient who actually does still feel healthy enough to share information and agitate for the cause.
Finally, I also need to note I am a lucky person. I am not yet completely crippled by Lyme. I have a job. I still have some friends. My partner has not left me yet. I am safe and not homeless. I’ve made it to age 39. I might make it to 40. I am not seriously depressed or suicidal. I can still drive. I can still get out of bed. I have one doctor 90 miles away who does not think I am crazy and who only charges $250 a session.
So, yes, I am one of the lucky ones. You might remember that before you post a picture of you and your wine glass and tell me – or any of us – how crappy your day was.