I got paired with the lovely Sarah McMillan at The Master Patient. We decided to interview each other about living with invisible illnesses. We have similar diseases and are at the same stage of life (more or less), but we actually have different perspectives on some of these questions. Read away & also check out my interview here!
My name is Sarah E. McMillan and I am a blogger at The Master Patient http://www.themasterpatient.com. I have Marfan syndrome, a connective tissue disorder that primarily affects my heart, eye, bones and joints. I am also legally blind and write a lot about my experience with invisible disability. I started The Master Patient to integrate my roles as a social researcher with my lived experience as a patient.
Q: How do you find out about your illness? Was this something that came about suddenly? Did it take a while to find the right answer?
A: I was diagnosed with Marfan syndrome (MFS) when I was two and a half, so for me, there wasn’t a specific moment in my life where I remember learning about my illness. Everything about my diagnosis I learned from my parents because I was too young to know what was happening and to be honest, I never asked much about the circumstances around it. I don’t have a “diagnosis” story, like most people with a chronic illness do; I guess I just always knew I had MFS. I remember my mom giving a presentation to my elementary school class about it. My pediatrician first suspected MFS because of my vision and heart problems, which are classic symptoms of the disorder. I fit the clinical diagnosis pretty well so that was that, there is no ambiguity around whether or not I have it, even without being genetically tested for it. For me the moment that stands out about my illness is my heart surgery when I was 10, rather than going through the process of diagnosis.
Q: What do you do when people ask you why you’re sick? (or why you’re still sick)?
A: To be honest, I never use the word ‘sick’, mostly because I don’t feel that I am ‘sick’. I actually even dislike using the word ‘illness’ and when I write about myself as having an illness, I always have that pang of ughhh. I don’t know how else to describe that feeling. To me, being sick is like having a cold or a flu, not living with a chronic disease. Did I mention that I hate the word ‘disease’ even more? Condition, chronic condition makes me feel the most comfortable. To answer the question, not many people ask me why I am sick, probably because I don’t view myself that way or present my condition that way either. There are some things I cannot do because of MFS, such as going on roller coasters (my heart) or drive (my vision) so those things come up more often. People are generally more intrigued by the fact that I am legally blind than my MSF because I appear to them as being fully sighted.
Q: How do you find a balance between being sick and not letting being sick define you? Or is there a way to redefine yourself through illness?
A: This is a good question and one I have been trying to figure out for years now. I actually wrote my graduate thesis on medicalized identity for individuals with a Marfan syndrome diagnosis because of my quest to incorporate MFS into my life. Since I have grown up with my MFS, I am not like other people who have a pre-diagnosis life and then a post-diagnosis life, but I still feel like I am redefining myself all the time, especially as I keep on exploring what living with MFS means in my life. I think it is obvious that it has shaped my life and who I am. However, I am only starting to accept that now. I spent a great deal of time in highschool and university pushing away the part of me that identified with having this condition because of the stigma that is attached to illness. For me, I found (and still find) it difficult to incorporate my illness into my identity when the whole world views illness as something that is negative, pathological and abnormal. What I have realized is that I cannot be my authentic self if I do not accept my condition and so I am slowing trying to accept it. What I really wish is that people would stop putting such a premium on being ‘healthy’.. wishful thinking.
Q: What’s one thing that you’ve learned about yourself in the past year or so, as a patient or as an activist?
A: Hmmm this is tough because I have learned a lot about myself this year. I would say the biggest thing is I am learning to be more open about my condition with others and accepting of my condition within myself. That was one of my goals for establishing The Master Patient in the first place. I guess that falls into the area of both patient and activist!
Thank you so much Sarah!!