The Journey Begins

Depression

Lupus

Insomnia

Fibromyalgia

Irritable Bowel Syndrome

Pelvic Floor Dysfunction

Immunoglobulin Deficiencies

Obsessive Compulsive Disorder

Binge Eating Disorder

Hoshimotos

… and the list goes on.

I have become my medical diagnoses. Somewhere in the last 6 years, I lost myself in trying to figure out what was wrong with me. I received diagnosis after diagnosis each with different medication and treatment recommendations, none of which seemed to ever do the trick. I got so caught up in trying to find the right diagnosis – the one that was going to be “the answer” to all of my problems – I completely lost track of who I was, who I am, and who I want to be.

I have no idea what used to make me happy. Because contrary to what I tell my therapist, there once was a time I can remember when I felt true happiness. Maybe not all day every day, but at some points during some days. I just can’t remember what led to those moments.

When I think back, it must have started when I was in high school. It took over and ultimately became my sole purpose in life during my senior year in high school after I lost my grandmother and my “friends” decided we were no longer friends. I used all of that new time and energy to focus on my health. But the more I focused on it, the sicker I got. I got diagnosis after diagnosis from awful doctors guiding me in the wrong directions.

The first wrong turn came when I lost my virginity. Everyone said the first time hurts so I figured it was normal. Everyone said the first few times can sometimes hurt, so I still wasn’t very concerned. A few months later, the pain started getting worse. I was in so much pain, I couldn’t get through it without crying. And being young and naive, I never made my boyfriend stop because my 17-year-old self thought that would just be so embarrassing. At my next gynecologist appointment, I told her about what had been happening. She immediately dismissed me and asked if I had tried using lube because I was probably just dry.

Almost a year later, my GI sent me to a surgeon specializing in motility after running out of most conventional options to treat my IBS. After numerous extremely uncomfortable tests and procedures, the surgeon diagnosed me with a severe case of Pelvic Floor Dysfunction and referred me to a physical therapist who specialized in treating it. So I went to see this PT, who happens to travel the country to train other PTs in treating Pelvic Floor Dysfunction and is extremely well known in the field. So it was extremely discerning to hear her say that I had one of the worst cases she had ever seen after the initial exam. She also said she didn’t know how it was physically possible for me to be using tampons in my state, let alone having sex.

This is just 1 example of the many experiences I had with mis-diagnoses, ignorant doctors, and bad advice from medical experts.

I’d be lying if I said there weren’t other issues and contributing factors that have led me to where I am today. But when I take a step back and look at the big picture, it all leads back to this: I’ve let my medical conditions define me and become who I am. I’ve let them constrict me and squeeze who I once was out of me. I’ve been spinning more and more out of control and haven’t stopped looking for more solutions and answers. I’ve decided that ends today. Today I have hope not that I will find the answer to my chronic health mystery, but for myself – that I will find my way back from this. I’m so tired of feeling empty and sad and alone. I’ve spent too much time feeling sorry for myself and blaming everything on my health. I’m making a vow to stop letting my illnesses define me. 

4 thoughts on “The Journey Begins

  1. Wow! I cannot imagine how tough it must have been to have all these things going wrong and nobody helping you or listening to you. I am glad you have got your various diagnosis now and know what you’re dealing with. It does help.

    Also, I’d like to welcome you to the blogging community! I am grateful that you would share your story so openly. We don’t share any diagnosis, but I am passionate about raising awareness for chronic illness and believe that sharing our stories is the best way to educate the people around us and get the support we need from an understanding community.

    Well done for taking the first step! I look forward to reading more.

    p.s. Love the blog name! 😉

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