1) Introduce yourself – Who are you, where are you from and a bit about yourself.
My name is Mady, I’m 16 and live in rural Missouri. My family runs a small hobby farm with dairy goats. I hope to one day go to college to become a social worker and help families in a hospital setting. I love horseback riding, dog training, and spending time with friends!
2) What is your chronic illness journey so far? When did your symptoms start? And what were they?
My chronic illness journey started when I was around 12, I remember questioning what was going on and thinking I had the stomach flu until it didn’t go away. I began feeling sick and nauseous most of the time to varying degrees from a mild annoyance to laying in bed all day. The nausea persisted for a few years, but it was manageable with over the counter medications and eating small meals. In the last two years however, things took a turn for the worse. My symptoms became very troubling. Daily vomiting and struggling to keep food down. To make matters worse, I began to get dizzy spells and started passing out. At this point my symptoms are only managed with round the clock medications and a service dog to let me know before I pass out.
3) What is it like living without a diagnosis? Have doctors been good/bad? Are you taken seriously?
Living without a diagnosis is hard. My symptoms are very real, yet I don’t have a name to put to the thing that’s destroying my body and taking away the things I loved. Doctors have been hit or miss, the first doctor I had dismissed me, as he decided it was all in my head. I went through multiple doctors who just gave up and told me to find someone else after tests weren’t giving any answers. I wasn’t taken seriously for a long time. However thankfully we stumbled across my current doctor who has taken me seriously and is truly trying to find answers for me.
4) How long have you been living with your symptoms?
I have been living with symptoms for around four years now, but in the last two years is really when my world was really turned upside down.
5) Can you tell us what it feels like living with these symptoms but not yet having any answers as to what is causing them?
Living with my symptoms yet not having a diagnosis is incredibly disheartening. Its also very isolating. When you have a diagnosis you can connect to others battling the same thing as you, I can’t connect with people going through the same thing nearly as easy because I don’t have a name to type into the search bar.
6) Getting a diagnosis, however devastating, can help you come to terms with what is happening. How does not having a diagnosis affect you on a personal and practical level? Would a diagnosis change that?
I have had countless tests but not many treatments as we don’t know what we are treating. I have been on quite a few different medications to manage my symptoms. We are shooting in the dark with medications and treatments so I have tried more medications than I can count, some simply do not work, and a few made my symptoms worse. However, we have found a mix of medications that do help manage my symptoms and for that I am thankful.
7) Do family/friends/colleagues take it seriously? Do they support you?
I am blessed to have a supportive immediate family and friends, who have supported me throughout my journey. My extended family tend to just disregard me as they don’t understand how anything real can go un-named for so long. My previous school did not support me and made my last year being a full-time student miserable and much harder than necessary.
8) How do your symptoms affect your life?
My symptoms have turned my life upside down. I used to be very active; running, hiking, and playing sports. Now I struggle to do the farm chores without getting incredibly dizzy or even passing out. Because of my GI (gastrointestinal) issues I rarely eat out or spend the night at friends houses anymore. Due to the increase of symptoms and my inability to keep up with school I had to drop down to part time doing most of my school work online. My life has become limited despite my best attempt to not let these symptoms stop me.
9) What is something you wish people knew about living with these symptoms but not having a diagnosis?
I wish people knew that my symptoms are very real. That myself, and others who are living without a diagnosis, are not making it up. Whenever you disregard us as it being in our head you make it that much harder to battle our realities. I wish people knew how hard it can.
10) Anything else you’d like to share about it or your experience?
I want to share that although things can be tough, and it sometimes seems like it’s never going to get better, that I have hope. If you are in a similar situation, living day to day in your own reality but not having that validation of a diagnosis, don’t give up! Continue to fight and advocate for yourself.
