This Saturday I am participating in a fund raiser for Lyme Disease. I’ll be the first to admit that I have not been very pushy about people donating, but basically my sister was the only person I know who cared. She also showed my mother how to donate because my mother cared too, but that was it. What I have come to realize in the past few weeks is that nobody cares.
I don’t mean that nobody cares for me personally, I have many wonderful people in my life who care about me and how I am doing, but they could care less about Lyme disease and fibromyalgia. While I matter to them personally they don’t even know enough about chronic illnesses to even understand why there is a need for fundraising. The thing about chronic illnesses is that by nature of them being “chronic” you don’t usually die (you can die of Lyme, but that is fairly rare and not my case). I’ve come to realize that if you are not in danger of actually dying then people don’t feel the need to expend energy and resources to help you. So many people donate to AIDS and cancer research (as they should) but would not ever consider donating to Lyme disease or fibromyalgia. People with chronic illness face a lifetime of pain, exhaustion, and disability. A lifetime of people telling them to get over it, of people telling them they they are too depressing to be around, a lifetime of failing to meet everyone’s expectations, but that is not enough to attract anyone’s attention. Nobody would ever tell a cancer patient to just get over it and stop dwelling on their illness, but people with chronic illness hear this practically every day and that is ridiculous.
Thousands of people are diagnosed with Lyme disease every year and thousands more are misdiagnosed with something else. Most people think that Lyme disease is no big deal, you’re treated with a few days of antibiotics and you’re fine. This is true if you catch Lyme right away and receive treatment right away, but because doctors are uneducated in Lyme very few people are lucky enough to get diagnosed quickly. If more time and energy was spent in educating people and doctors then there wouldn’t be so many serious cases of Lyme disease out there. In my case I went two years trying to find out what was wrong with me and I was lucky, most people take more time then that. But because doctors know so little about Lyme and so little research has been done I will most likely be disabled for the rest of my life, I just went too long without treatment.
Too many people are of the impression that there is already a cure for Lyme disease, antibiotics, but antibiotics are only a cure if you catch it quickly. I could spend the rest of my life on antibiotics and my joints would never recover. This is why money is needed for research. There needs to be better testing available and doctors need to know how to use the tests they are given. The current tests are wildly inaccurate and are very likely to give a false negative and highly unlikely to give a false positive and yet most doctors blow off any Lyme patient with a positive test as a false positive. The Lyme test will also only give the correct results if it’s taken at just the right time, it actually won’t be positive right after you are infected, which leads doctors to deny that their patient has Lyme, which delays treatment and endangers to patient even further.
Why do we fear death more than we fear permanent disability? If you gave many people disabled by Lyme disease or fibromyalgia a choice, they might choose a disease like cancer because at least if they had cancer they would get some support. I’m not saying that cancer is easy by any means, but people care about cancer and they don’t care about chronic illness, and I can’t even explain how difficult it is to be disabled by an illness that no one believes is real. Not to mention the insurance companies will pay for cancer treatment, they won’t pay for Lyme disease treatment. This is why funding for Lyme disease is so incredibly important, but how do you make people understand that when they think that Lyme already has a cure? Education, education, education, I can’t say it enough, education. If you have a friend with Lyme or any other chronic illness, ask them about about it, find out how they live from day to day, ask them what their future holds, ask them how their care could be better managed, ask them if there should be more awareness for their disease. Ask them all these things and support them, support them and support research and funding for the disease that effects them.
* Update: Now that I’m no longer in a rage, I do want to acknowledge that it is really hard to care about every one and everything. Lots of people have lots of different problems and it so difficult to pay attention to every single one. I just wanted to express my frustration with the fact that that chronic illness gets so little attention.