There’s this dark area where sick people aren’t being believed or listened to and it’s not only causing fear but it’s causing insane conspiracy theories and wild accusations.
Lyme is real, the CDC and doctors everywhere agree on it. They don’t believe in chronic Lyme though, and they say that after the first round of medication you are completely healed. As someone who has had the first round of medicine let me tell you, it wasn’t enough, and had I been given more treatment right away I probably would be well, but instead I was given time for that infection to spread. I had to find more treatment in different ways and because it got so bad I had to learn about other ways to support my body that might not be traditional (I talked about real medicine and fake medicine here). It’s been a hard road, but some doctors still stand by the fact I was well after the first round of treatment. It’s the same thing they have told countless others who are still very much sick. The worse they get the more they make them spend on tests trying to find something else, or worse tell them it’s in their heads.
Of course people go nutty, but the level of distrust doesn’t just lead to sick people, it has lead to something else entirely.
I’m a member of a few groups and chats for people with Lyme. It’s good to have a support system and it’s good to offer advice, but on these forums, I’ve noticed people who have gone to far into conspiracy. They believe the government (the CDC) isn’t just ignorant but that they’re covering it up on purpose. That’s not the case at all. They used to tell people asthma was in their heads and that it was just panic attacks before they discovered the root of it. It’s a question of medicine catching up and people believing studies that are coming out. But the idea that the CDC, government, or even everyday doctors are out to get them came naturally by them being ignored for years as they got sicker.
I don’t know how people expected a different outcome. People are sick and the lack of support is to blame, even if it wasn’t done on purpose, even if the doctors were well meaning (which not all of them are).
It goes to show that pushing topics into the dark and trying to dismiss pain and suffering doesn’t lead to the problems going away. It makes the pain and suffering worse, and it breeds a type of hate and resentment that triggers all types of beliefs and fears. It’s a natural thing. It’s hard to call it that, because some of the ideas seem so out there, but it all stems from the suffering and in that sense, it makes sense.
I don’t think there is anything I can do about the system. I can’t make doctors look harder at research or up funding to that research (after all I spend practically all my money on medicine at this point). But I think that this trend needs to be talked about and understood. People need to know why Lyme patients sometimes go to far into the “dark web” way of thinking. They need to know that this way of thinking comes out of any place of suffering that’s been ignored. It’s the only way to beat that way of thinking and maybe it’s the only way to get people to try and bring change to a disease that clearly has more to offer than it’s been given credit for.
I’m lucky that I have been able to get treated by a doctor who acknowledges and treats chronic Lyme. A lot of people don’t get that opportunity. Instead of mocking the communities who seem to have fallen too far down the rabbit hole, maybe it is time to offer them a hand to get out of it.
The world is cruel and ruthless, but it’s not completely out to get you, even if it feels that way. That’s impossibly hard to see when your bed ridden with pain and illness with only the internet as support.