If I had Cancer, I would have a better chance of being diagnosed early on in the illness. I'd have a better chance at being diagnosed. Period.
If I had Cancer, there would be a treatment for me. Even if there were unfavorable odds, there would still be a treatment, and someone being able to tell me the odds of that treatment being successful or not.
If I had Cancer, I'd know there are decades and decade’s worth of research; and that Cancer funding is always growing – there are walks, commercials, and nonprofits raising awareness and research funding, so treatment options are always getting better.
If I had Cancer, I’d know there would be entire communities to offer support, to find peers, and to rally around me.
If I had Cancer, I would be given multiple treatment options. I'd be sat down in an office and given choices of what kind of approach I wanted to take - and if I wanted a more aggressive treatment, that option would be there for me.
If I had Cancer, I could pick from a pool of specialists openly; knowing that I have those options and that seeking specialists are encouraged, if not mandated by insurance.
If I had Cancer, I wouldn’t need to keep my doctor’s name secret, and I wouldn’t worry that they may or may not get in trouble for treating their patients.
If I had Cancer, I would be welcomed in any hospital. I could get my treatment there whenever aggressive treatment was called for. There would even be hospitals that specialise ONLY in my illness.
If I had Cancer, I'd be able to walk into any ER knowing my illness and my emergency would be handled with the utmost care.
If I had Cancer, I could get assistance and state health care. Sure I'd still have bills, big ones, I know, but many things would be covered and the cost would be nowhere near what it would be without insurance.
If I had Cancer, my pharmacist wouldn't look at me like I'm crazy when I pick up my monthly medications.
If I had Cancer, my family and friends would be in their comfort zone. Upset and worried, sure - but they know what Cancer is.
If I had Cancer, during my treatment, it would likely be visible to those around me. People would *know* just be looking - that I was seriously ill. If not, I could say, “I have Cancer” and people would have more compassion and understanding.
But I do not have Cancer.
I have Chronic Lyme Disease and Chronic Tick Borne Illness.
I have Lyme, and I went undiagnosed for over half my lifetime. I lived in areas where ticks are prevalent, and yet not one doctor even mentioned Lyme Disease.
I have Lyme, and so treatment is all "guess and check", "hope and see", but no solid: "This is what we do and it will WORK – REALLY WORK." There are no odds, just a blind hope that this treatment will work for my kind of Lyme disease and co-infections.
I have Lyme, and I know it's only in its infancy of research. I also know that researching Chronic Lyme is looked down upon, so it lacks funding. There are no commercials for Lyme Disease, no 3 day walks to raise awareness and funds, no boxes in the grocery store collecting money for Lyme Disease research...
I have Lyme, and if I was seeing a general practitioner they would give me ONE treatment option - 14-28 days of doxycycline – That is if I could convince them this really was Lyme. And if that didn't work, I'd be told to go see a therapist, maybe even yelled at or told to find another doctor. They would never bring up that there is another treatment option out there.
I have Lyme, and if I want to see a specialist, I have to find a forum that is basically an underground network of Lyme patients who are willing to share the names of their Lyme specialists in secret. These specialists are limited, and may not be in my own state. I may have to travel hundreds of miles to see one, or hope that I can find a doctor near me who is willing to treat me with ILADS protocol. Insurance will not cover these specialists, or these specialists may not accept insurance. Because insurance companies will report them and try to get their licenses taken away. So treating Lyme Disease is this secret covert operation.
I have Lyme, and so I can go to any hospital, but I may not be welcomed. I may be sent home, or told to go see another doctor. I may be sent away without getting the treatment I need, or only getting the treatment they see fit, and sent home still sick and weak.
I have Lyme, and so if I go into an ER with an emergency, I will be argued with and yelled at. My doctor may be called and yelled at, they may even be reported - and the ER doctor will insist that CHRONIC LYME DOES NOT EXIST, and if they cannot find anything "wrong", I will be sent home - untreated.
I have Lyme, and so there are many specialists (cardiologists, endocrinologists, neurologists) who will refuse to see me.
I have Lyme, and so I cannot get assistance, because the CDC claims that Chronic Lyme does not exist, and so therefore: my illness is not severe enough nor will it be long enough to warrant assistance.
I have Lyme, and so my pharmacist looks at me like I have three heads when I pick up my monthly prescriptions of antibiotics, antimalarials, etc, etc. They say nothing, but I know they think I'm nuts.
I have Lyme, and so my family and friends don't understand it, and it is out of their comfort zone. Many have rejected it, and therefore me. Many minimize it, believing it is less than it really is. They do not understand it, and they are not willing or wanting to know. Because all of the “popular” medical sites say: Chronic Lyme dose not exist.
I have Lyme, and most of the time my illness is invisible. I look "great", I look "normal", and so people do not understand and often brush me off as an attention seeker or head case. I receive little compassion on days when I have to cancel plans or stay in bed. No one sees the excruciating pain I’m in every single day.
I have Chronic Lyme Disease.
Right now, if someone is going to be diagnosed with Lyme Disease, they have to have the knowledge about the illness, the proper tests, and the treatments THEMSELVES.
Right now, with the IDSA's guidelines a person who knows nothing about Lyme, who is sick with Lyme, who goes in to see a general doctor won't get tested or treated for Lyme.
Right now - the patients have to be the ones to figure out the puzzle, and then find a doctor who knows about Lyme and can run the tests.
Right now - Lyme patients have to fight for everything we get, for every treatment, for every doctor visit.
That isn't how it is supposed to be.
When people are sick, they should be able to find help. Doctors are supposed to know what to look for, how to test for it, and how to educate their patients on possible treatment options. Doctors are supposed to treat you and do whatever they can to heal you. But most doctors who have a Lyme patient - don't even think to look at Lyme because they believe: Chronic Lyme does not exist. And that Lyme Disease is rare and easy to treat. Most doctors would look at that patient and tell them nothing is wrong with them, their labs are fine, and send them home undiagnosed and untreated.
We need change. There has to be change.
*note: I understand the seriousness of Cancer and would not wish it upon anyone, nor am I trying to compare pains.... This is an expressive piece.... Thank you for understanding.