I'm not unique. I'm one of the 133 million American's, nearly 40% of the population that lives with chronic illness. And it sucks.
The best way I ever heard someone describe chronic illness was to imagine everyone on the freeway driving an automatic car. Their cars just run and need a little tune up here and there, but that's it. You on the other hand drive an old ancient stick shift. You can't just go with a flip of the ignition. You have to constantly put all this work into making your car run or else you'll find yourself dead on the road.
The day I was diagnosed, I felt like I was in an afterschool special dealing with a "special friend." It felt good to know what was wrong with me but then I also now knew what was wrong with me. Things after the big announcement quickly got progressively worse. Medications I was put on didn't work. I had no energy. I had no life. I ended up having to leave my job and blow up my life because I just couldn't manage. It was the worst couple of years of my life hands down.
In the meantime, my mom became an over worrier about me and my dad wanted to turn me into the poster child for chronic illness and disease I think he just needed to figure out a way to help something he couldn't, but he channeled it into this "I need to be a warrior," attitude which I did not actually have for myself. He would send me email after email about living with chronic illness. He would ask if I wanted to sign up for medical trials. He took me to a couple of seminars and wanted me to do charity runs and be "that girl." The final straw for me was attending a support group when I was definitely at my lowest, and instead of it being a positive thing, I found myself surrounded by people who described how much worse in detail things could get and that was 100% the last thing I needed, so I left and never came back.
Here's the deal for those with chronic illness---you've got to take care of yourself mentally and physically. This is a given. The people around you will be idiots about your illness. They will give you the worst advice, they may never fully get what you're going through, they will try to cure you with twigs and berries because "it worked" for some distant cousin you've never heard of, but know this---for most people, this is coming from a place of love and lack of education. Communication and education are your best tools to get them on board with what you want and need especially when you need to take a break or you're struggling with your health or things like depression.
Know that you get to handle what you're going through your way. Unless you're a minor, you have the right to make your own medical decisions for yourself and you don't have to tell anyone else about them if you don't want to or your doctor to tell anyone else but I'd highly suggest you let someone in. Surround yourself with people that give a damn (idiots or not) who love you and don't make you feel bad for things that are out of your control. And despite my failings with my support group, "your group" can be your family or friends, or someone who shares your same illness, but do find someone who you can be absolutely real with down to the nitty gritty because it will help you not hold on to your feelings and stresses especially if you find them crushing you trying to hold everything together. I am thankful every single day for my best friend who is my angel to the core.
As bad as it can get, you've got a life to live and even on your worst days, there are still birds that chirp, and roses that bloom, so keep your eyes open. I may not be a front lines activist health warrior, but I am a champion for myself and my needs and at the very least, those that live with chronic illness should be too. Give yourself credit for getting through another day and thank those around you that truly love you unconditionally.