The first thing I noticed was joint and muscle pain after working out. Then one day, during my first year of graduate school, I woke up with pain that never went away. That’s when I knew something was really wrong.
At first, I thought it had to do with being stressed out with school. So did my doctors. But when they started doing tests, and results started coming back abnormal, I realized this wasn't something that was going away any time soon.
Actually, in my last year of undergraduate school, I had had strep throat about five times and pink eye five times. When I finally saw a rheumatologist in January 2008, he wondered why no one had flagged those things. Without other symptoms, it was attributed to the stress of college.
I went for my Masters degree at the same school where I had received my undergraduate degree so the faculty knew what my abilities were. But when I got sick, their treatment towards me really changed. It had been hard for me to talk about my health issues, and when I finally did open up about them, I was met with skepticism and the attitude that I probably shouldn’t go into academia because I wouldn’t be successful.
But I went all the way through to get my Masters and my PhD in sociology, at least in part to prove to those people that I could do it. My diagnosis, though, made me rethink my career. I realized that I didn’t want my limited time and energy to go into academia, not because I couldn’t do it, but because I really wanted to do something that had to do with health and illness.
So I got a second Masters degree, that one in a health advocacy program at Sarah Lawrence College. I saw it as the way I could help coach people like me with a chronic illness.
I moved on to a totally different path. But this is what I was meant to do.
A professional patient advocate is someone who typically works at a hospital. When I worked at a hospital, I dealt with a lot of patient complaints, billing issues, insurance issues, but all with the main goal of helping people navigate the health care system, which is very complicated.
And when you’re sick and you’re tired, you might not be the best person to get yourself through all the red tape and everything that comes along with it. This is a growing field, and I think it’s really important that more and more patients take on these roles because they are well-suited to help other people.
Through all this, I’ve learned what’s really important to me in life. I feel that if I had stayed the course in academia, without illness, I still don’t know if I would have been happy. But my illness got me on this other path and it has been very fulfilling.
I feel like I’ve taken a really negative part of my life—getting sick—and been able to turn it into something positive.
I’ve also learned that I’m a better advocate for others than I am for myself. When it comes to being advocate for other people, I can take a step back. I can empathize with them, but I can also look at a situation with clear eyes and say, “We need to do X, Y and Z.”
But, when it comes to myself, it’s very emotional and from the patient’s standpoint, it can be very frustrating when you feel someone is trying to get in the way of your health care. When I’m working for other people, I have the eye of a patient who can say, “Yeah, this situation stinks,” and can also say, “This is how we’re going to fix it.”
I can’t always say that to myself. I might know what needs to be done, but I don’t always see things as clearly as I do when it’s not me.
I started my blog, Getting Closer to Myself, a week after my diagnosis. At the time, I barely knew what a blog was, I really started it as a place where my family and friends could go to get the details of my ever-changing medical situation.
But,I quickly discovered I wasn’t alone, even though at the beginning I felt like I was the only person in the world going through what I was going through. Now, some of the relationships that I have online through blogging or social media are some of the most important relationships in my life.
Even if you’re across the country communicating with somebody on the computer, you don’t feel that distance because you have this shared experience.
One thing that I’d tell someone who is newly diagnosed is that your life isn’t over. For me, I say that my life began with my chronic illnesses. It took me on a career path that I probably would have never been on, particularly when I became a patient at the age of 22.
It’s also important to have knowledge about your disease.The only way to be a good advocate for yourself is to educate yourself. Knowledge really can be power.
I know that when you get a diagnosis and you don’t really understand it and you’re overwhelmed, it can feel like your life is over. But your life doesn’t have to end with illness.