I want to preface this post by saying that I know that this may cause visceral reactions in some.
I experienced something today that brought to mind a subject I have long had opinions about but was not brave enough to write about. I think it is now time for me to cover it.
The lyme community is a pretty tight knit one. I get friend requests frequently from people who I have not met, but who are going through a life experience (having lyme) that ties us together. Most of the time I accept these requests and have met some pretty amazing people this way. On the other hand, I have met some who have made me question my policy of accepting “lymies”. This morning a person who is a fellow member of the lyme community posted a suicide note on their status. Suicide is the leading cause of death in lyme disease sufferers. I think they get tired. Tired of seeing their bodies deteriorate, tired of feeling so terrible and being told nothing is wrong with them. Seeing this post this morning caused me quite a bit of distress. I wanted to make sure they were ok but they live across the country from me and I have never met this individual in person. Some other people became concerned too, the police were called and long story short, I came to find out that this person claims 34 different illnesses. Now I know as well as anyone that lyme disease can cause a lot of maladies, but this person has joined every type of cancer group as well as many, many other illness support groups as well. They did not kill themselves. In fact, they were spotted driving around the town they live in very happily. Surely enjoying all of the panic and attention from the concerned village on Facebook. Obviously there are some issues going on here, but doubtful in my mind that lyme disease is it.
The whole thing with lyme disease, is that most of us who have suffered have had to fight to get diagnosed. We have had to fight to be taken seriously. Quite literally, we have had to fight for our lives. Doctors, family members, friends, and colleagues most of the time do not understand this illness and are not at all informed about it.
I think that because there is so much unknown about lyme disease, it makes it a bit of an easy mark for the fakers and attention seekers. There I said it. I have hated to even go there because of the fight we all have to take on to legitimize lyme disease, but at the same time, think it has to be said because these people are genuinely undermining the progress the lyme community makes. Don’t get me wrong. I know that lyme can cause mental health issues, and that our tests are not at all accurate so it is virtually impossible to separate those who are truly lyme sick from those who may just see an opportunity for attention. This is another reason why the lyme community NEEDS accurate testing.
When someone fakes cancer, there is absolute outrage. Not so with lyme. Yes, this person I mentioned above, has also done that with cancer apparently, but always returns to lyme. It made me wonder how many other people out there see this as an opportunity to jump on the sickness bandwagon and get some attention. After all, it can’t be proved that they don’t have it. Every person who is not ill but wears lyme disease as a badge for attention detracts from the true sufferers and it makes me so mad. There seems to be emerging a subgroup of the lyme community of people who almost take pride in being sick. They don’t want to talk about treatment options. They don’t want to talk about getting better. They seem to define themselves by being a lyme disease sufferer, constantly posting about how terrible lyme is but not doing a thing to treat it. I am not talking about those who can’t afford it. I am talking about the people like the person I referenced above who runs constant GoFundMes and never seems to get any treatment at all. The person in question, did however, travel across the country with what I am assuming are the funds from these campaigns.
I have thought long and hard about this subject, and what can be done about it. There are “lemons” in every group I know, but with everything already stacked against lyme disease patients, it is of the utmost importance to try and stop their negative influence when at all possible. I think the most important course of action is for the true “lyme warriors” to keep our voices loud and clear. We need to advocate for accurate testing and affordable treatment in the United States. We need to drown out all who may not have the best interest of the lyme disease community at heart.