Now before you start sending me hate mail, please indulge me as I explain what I mean.
I watched my mother die from cancer. I’ve had many friends and other family members that have suffered from the disease. It is horrific and devastating. I wish it on no one.
However, like cancer, with Lyme disease you are fighting for your life, every day.
First: When someone tells you they have cancer, there is an instant reaction of sympathy and concern. A knowing of what is to come for your friend or family member. I’ve met very few people over the years that know anything more of Lyme other than it is an “east coast” thing. Chances are someone who is suffering has had years of debilitating symptoms and fear of the unknown well before they got a diagnosis. This is a very isolating illness as you are for the most part in it on your own. I would be lying if I didn’t say that my feelings have been hurt by both family and friends who don’t reach out. I tell myself that they just don’t understand the severity of Lyme, but it hurts nonetheless. A casserole brought to my house might be nice. Admittedly, that would be a pretty boring meal considering the dietary restrictions and all…
Second: There are no outward signs of Lyme disease. We don’t lose our hair with treatment. We may lose weight, but we may not. We do look exhausted (I can pick out a Lymie a mile away), but this has probably been our look for so long, it seems normal to you. You also don’t see that every bone/joint in our bodies hurts all the time, not to mention the exhaustion, the Alzheimers effects and an incredibly damaged digestive and nervous systems.
Third: There are no pink ribbons or three-day walks for Lyme disease, yet it is more prevalent than both AIDS and breast cancer. (You really should listen to the podcast!)
Fourth: You can come with me to my doctor’s appointment; however, all that will entail is going over blood work and general information. (Still I am forever grateful for those that have accompanied me.) There is no sitting, for me at least, while having treatment at a center. I suffer at home, in bed. If you have someone to help you with your PICC line or meds and someone who can sit by you at night when the sweats come, the nausea kicks in, and when the mind-bending headaches and insomnia won’t go away, you are lucky.
Fifth: There is no timeline for treating Lyme. I know people have had to treat cancer and other diseases more than once, and that sucks big time. However, I don’t get any kind of timeframe for treatment. There is no six months of chemo then radiation. I have felt on many occasions that I’d give anything to have these treatments. At least then I’d have some sort of end date, even temporarily.
If I was told that I’d have to lop off my breasts, go through radiation and chemo, lose my hair and be sick for one, two, five or even ten years, I’d say sign me up! Sounds crazy right? I’m in year 21 of living with an invisible illness that just continued to get worse and worse with no answer for more than 18 of those 21 years.. I would not ever go through the process I’m going through now again. As happy as I am to have my doctor and the treatment I have had, it’s not worth doing again. Treatment is worse than the disease itself often. It has taken me to dark places so many times. I’d much rather be hanging in heaven with my mom most of the time. Having said all that, I feel that there is nothing that I can’t do after all I’ve been through. I’m a freakin rock star, no doubt, but I wouldn’t put my body through this again.
Treatment needs to get better. Fast.
pictures taken from a trip to the emergency room with Lyme related problems.
Sixth: Most Lyme specialists don’t take insurance. This is very expensive to treat properly. Over the past two decades I’ve spent tens of thousands of dollars out of pocket. This has to change. We need more research and financing so that others won’t have to suffer the way so many of us have. Even with medical coverage, my medication can run up to over a thousand dollars a month.
As a side note, some doctors who specialize in Lyme have had to shut down their practices and have lost their licenses for treating patients outside of ridiculous guidelines. I’m looking at you IDSA! I could school just about any doctor on the West Coast about this disease. It’s insulting how many times doctors have said uninformed things to me.
If it sounds like I’m angry, I guess I am a bit. I’m mostly just sick and sad. And until/unless the medical field gets on board, we have to shout from every rooftop.
Lyme disease is just as awful as cancer and deserves the same platform as other more commonly known illnesses.
Thanks for listening.