The 20 Year Long Journey That is Never Ending

Have you ever had a feeling that you knew something was off, but you just didn’t know what? That is how I felt for more than half of my life. My name is Tara O’Connor and I have narcolepsy type 2. I have had symptoms since I was 2 years old and I didn’t get diagnosed until I was 22. May 2019 was when my life changed forever. My doctor told me that my MLST showed I had narcolepsy type 2. I didn’t know what was going to happen next because I had no idea I what narcolepsy was. I had mixed feelings for sure. I was thrilled to finally have answers and to know that it wasn’t in my head this whole entire time.

Growing up I was misdiagnosed with so many things and tried so many different medications. I was diagnosed around the age of 6 with ODD (oppositional defiant disorder). I was a stinker growing up for sure. They tried different medications, therapies, etc. Nothing worked. Fast forward to around 5th grade, I got diagnosed with ADHD (attention deficit hyperactivity disorder) and started taking medication for that. It helped me for about two years, then it stopped working. When I was in 7th grade, I got severely bullied and started to have problems in school. I was diagnosed with anxiety and depression and tried several other medications and therapies. Nothing helped.

In high school I started to develop other health conditions, such as irritable bowel syndrome after I had my gallbladder removed and also chronic migraines. I started to become exhausted all the time and every doctor just assumed it was depression. When I was a senior in high school, I got a sleep study, but they didn’t see anything so they said there was nothing else I could do.

Fast forward to college. I was in a very toxic relationship and my sleepiness became even worse. I started falling asleep while driving no matter the distance and no matter how hard I tried to stay awake. I finally got out of that toxic relationship and moved back home. In December 2018 I had a very bad fibromyalgia flare up and my family doctor referred me to a pain and rehabilitation doctor. I saw that doctor for about 6 months before he was certain I had something going on with my sleep and he referred me to a sleep specialist. It was because of him actually listening to me and hearing me that I have my diagnosis today.

For most of my life my friends and family were tired of me not feeling well and me being so tired. They always said I was faking it and that I am lazy. Still to did this day they do that. I try so hard to explain myself and my disease and they still don’t get it. It has started to become exhausting and toxic for me and my narcolepsy symptoms. People who do not have narcolepsy have no idea how constantly tired we truly are.

I am a volunteer EMT and future firefighter. I love doing it and it is something I am very passionate about. I have been an EMT for 3 years now and I am now in firefighting. I am on my volunteer fire department in the small town that I live in. I am also a narcolepsy advocate and am very passionate about spreading awareness about the disease. I hope no one else has to go 20 years without knowing what is going on. I am also a direct sales rep and I really enjoy doing that. I hope that some day I can find a job that allows me to just advocate for narcolepsy all day every day. I just want to help people. For now I am just sharing things on my personal social media pages.

My support circle is pretty small. I have found some amazing people who also have narcolepsy on different online support groups and I don’t know what I would do without them. They truly know what I am going through and they treat me like an actual human being. When I talk with them, I do not feel like a burden or that I am annoying them. There’s no one besides other people with narcolepsy that I have found I can truly talk to without being judged. It is so tough talking to people about what we experience and how we are feeling because no one else truly knows how tired we really are.

I could talk about this all day long, but the moral of this story is do not stop advocating for yourself or your children. I personally feel like my doctors just slapped the diagnosis of anxiety on me because they didn’t know what else it was. That isn’t truly their fault because narcolepsy mimics anxiety along with other disorders and if they aren’t familiar with narcolepsy they couldn’t have known that is what I had all along. Narcolepsy is tricky because it mimics so many other disorders and it shows differently in children and adults. If you ask others with narcolepsy if they were diagnosed with other disorders growing up, there is a good chance they will all tell you something similar. I have talked with several people personally who were misdiagnosed with every single thing I was misdiagnosed with growing up. It is crazy how similar yet so different each of us with narcolepsy are.

From my personal experience, putting myself first has been the most important part of my journey. It is OK to put yourself first and be a little selfish because if you don’t, who will? If I didn’t continue to advocate to my doctors over and over again, I still wouldn’t have my diagnosis and all it took was that one doctor to actually listen. If a doctor just keeps saying you or your child has anxiety or depression, think about getting a second opinion and make sure you are getting the care you deserve! This is all information that I learned during my journey and everyone is different. Just always remember, no matter what rare disease you have, you are never alone.

Tara O'Connor

Tara O'Connor

Hi there! My name is Tara O'Connor and I am 24 years old. I was diagnosed with narcolepsy type 2 in May 2019 at age 22 but I have had had symptoms since I was 2 years old! I am a volunteer EMT and future firefighter for the small town I live in. I am a direct sales rep and a moderator and contributor. I am also a narcolepsy advocate and an auntie of 3 cuties! I have a dog name Dude and he is my world! I hope that some day I can make a huge difference by sharing my story and advocating for narcolepsy  and other rare diseases.

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