What is it like living with a controversial chronic disease?

– You have to get used to the majority of people thinking you are faking. You learn to be on the defensive all the time, especially with doctors, you develop a huge mistrust of doctors. This isn’t necessarily a good thing, but it’s definitely a byproduct of a controversial disease.

– You have to do your own research. Finding a doctor that will treat you and give you information is difficult to do, so sometimes you have to be your own doctor. Quite often I am the one who brings up possible treatments with my doctor since she is not an expert but was the only one willing to treat me. She’ll research the ideas I give her and then come back and tell me if she thinks they are a good option for me.

– You give vague answers when you have to tell acquaintances about your health problems. I usually just tell people I have arthritis. If they inquire further I’ll tell them the whole shebang, but most people aren’t that curious and are content with the arthritis answer. Arthritis is something that everyone can understand and relate to, even if they think it’s weird that a 29 year old would have it.

– You get stuck with a lot of medical bills. Insurance companies are not willing to shell out for anything they don’t have to. Thanks to the CDC’s political games, insurance companies have an excellent excuse to refuse coverage for Lyme disease. Also many chronic diseases involve alternative treatments, therapies etc. all of which you pay for out of pocket. Even the things insurance is supposed to cover, they often manage to weasel their way out of paying with one excuse or another.The fact that you are sick and you have to spend all your time on the phone arguing with your insurance company isn’t great either.

– You learn really fast who you can depend on and who you can’t. Lots of people won’t believe you, but those that do are people you know are there for you. You might have less friends then you used to, but you know who is really there for you. 

– You quickly learn what is important and what is not, although for me it’s a constantly evolving thought process. I have to deal with a lot of crap just by nature of my disease, so I have very little tolerance for crap anywhere else. This has been great for me since I tend to be a people pleaser, and instead I’m learning to take better care of myself and the people who are really important to me. 

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