I learned something very quickly once I was diagnosed... Stand up for yourself because you're the only one who really knows what's going on. My mom, bless her heart, was always standing up for me, with doctors, any time she could. But it is incredible how quickly doctors and other people dismiss anything anyone else has to say, so it was up to me. I learned very quickly that I had to advocate for myself. This included doing things like making my own doctor appointments, asking questions of doctors at appointments, and telling them exactly how I was feeling and what I was thinking. Advocating for myself came with many things including tears, fear, and being looked down on. Some doctors had a hard time hearing such big opinions from a fourteen year old. My pain doctor, who I have had since I was fourteen, and I have a really good relationship. We are comfortable with each other and I would go as far as saying that I know that he cares about me, my feelings, and my circumstances. He is wonderful. He has said to me multiple times, "So many doctors think that if they don't know what is going on, no one does. Us doctors get hot heads about things and we get arrogant. Doctors think they know everything and we don't." I always laugh when he says this because unfortunately I have run into SO MANY doctors on my journey who think "they know what's actually best for me" and are so sure that they have the answer to everything and when they don't they tell me that everything I feel is all in my head.
During my diagnosis, I was referred to a doctor at Children's Hospital here in Minnesota. It was to get a second opinion about a surgery my orthopedic surgeon wanted to do. This doctor told me I was crazy and he told me that I am "headed down a slippery slope." Whatever he meant by that, I will never know. I may have gotten pretty angry and that lead to not so nice things being said. I stormed out of his office in tears and on crutches into a lobby full of people. I walked right up to the reception desk to pick up a disc of images I had taken and a woman was checking her young son in for an appointment with that doctor. Through my tears I told her, unless she wanted terrible opinions and not good care, she shouldn't see him. She, her young son, myself, and my dad all rode the elevator out together. She hugged me and asked what happened. I told her my story, with more tears, and let her know that the doctor I had seen for something as simple as a second opinion didn't like that I knew what I was talking about and that I knew my body. This sweet woman, almost in tears herself, told me that he obviously isn't used to working with older kids who have opinions and who voice their wants and needs. She told me that I should keep doing what I was doing and that someone would listen. What a blessing she was that day.
Since that day, I have stood up for myself. To multiple doctors, on multiple occasions. I have been incredibly blessed to have found one who says, "I know you know your body. Tell me what you need. Tell me if something is wrong. Tell me what is changing." He obviously takes my feelings and his medical expertise, puts them together, and the two of us come up with a game plan. It has worked unfailingly to this day. This doesn't mean that treatments haven't failed or procedures haven't gone wrong. That stuff happens all of the time and is out of everyone's control. But, we have been on the same page the whole time, there is open communication, and a great doctor-patient relationship. Sometimes anger and tears still come, but we take them in stride and we talk about it. He has made sure that I am comfortable enough to voice my opinions, my concerns, and my wants. He has shown me that advocating for myself is the best thing I can do and that sometimes, there are those doctors who care more about their patient than their ego.
I pray that all of my chronic illness warriors are putting themselves and their illnesses first and that advocating for yourselves is happening!