Searching For A Diagnosis

Since I was little I’ve dealt with various health issues, the explanations of which ultimately added up to a solid, academic ¯\_(ツ)_/¯ .

Sometimes it was diet related. Other times it was stress or anxiety. Most of the time it was “growing pains” or just in my head.

According to my mom, I was complaining of health problems before I could even articulate what they were; I was so young that my vocabulary didn’t include words like, “I get dizzy when I put my head back” or “I see stars and the edge of my vision goes black when I stand up fast” or whatever else it was.

The Problems

In school I constantly had gastrointestinal issues. Every day I fought stomach pain. I’m sure some of it was food-related, but when you are living the life that I was, healthy food wasn’t really an option. I was never checked for allergies, either.

As if that wasn’t embarrassing enough, I also sweat through every shirt I wore. No deodorant helped; I was just a sweaty, gross mess all the time. No wonder I wasn’t very popular! It didn’t matter if it was freezing – my body couldn’t regulate my temperature.

Speaking of temperature: I’ve never been able to handle the heat. Living in Florida, I would reach points of such exhaustion that I felt I couldn’t move. I was called lazy and over dramatic. “You live in Florida, you’ll get used to it!”

Funny enough, though, I don’t need heat or exercise to make me exhausted. I’ve dealt with fatigue for at least the last decade.

When I reached middle school I started playing volleyball. I wasn’t bad at it, but I wasn’t great either. My hips and knees hurt almost on a constant basis. I was never able to overhead serve because my shoulder couldn’t take it. Again, I was called lazy and told to suck it up. It was all in my head, after all.

During matches and practices my heartbeat would be visible through my shirt. I’ve had heart palpitations for as long as I can remember and had to wear a Holter monitor when I was about 12 years old because of severe chest pains. I was told it was costochondritis and sent on my merry way.

To this day my heart does what it wants, no matter what the rest of me is doing. The other day I clocked it at 102 after I’d been laying down for almost an hour. It often flutters, leaving me feeling winded.

After standing for long periods of time my feet and calves begin to sting and develop red splotches, followed by pain. Although they don’t swell, they feel like they might burst at any moment. Again, over dramatic laziness. It couldn’t possibly be blood pooling.

My hands have been “shaky” since childhood. After some testing, I was again given the diagnosis of ¯\_(ツ)_/¯ and told it’s not a problem. It wasn’t until a few months ago, at the age of 29, that I was finally diagnosed with an essential tremor. Still, I wasn’t given a reason for it.

I have headaches every day, and I have for years. Even before my accident and injury, I suffered from them. From tension headaches to stress headaches to headaches stemming from my neck, they are always either there full force or waiting in the wings.

One of my pupils is noticeably smaller than the other, and they’re both dilated all of the time. I recently saw a new eye doctor and he actually asked me if I was on hallucinogenics because “I’ve never seen pupils that dilated unless I’ve done it or the patient is on drugs.”

My family jokingly calls me Goldie Hawn because of how ditzy I am. I am forgetful and often in another place entirely. What we have always attributed to a personality quirk I fully believe is brain fog.

Then there’s the joint pain. As I said, even in high school my knees and hips consistently hurt. Most of my joints hyper-extend to some extent, but my knees are the worst. It’s not normal for a 15 year old to be in as much pain as I was, which is probably why no one believed me. They all just thought I was trying to get out of something.

I was 23 when I had the accident that propelled me to where I am now. Although it was a pretty minor accident (I was the only one injured), I tore two ligaments in my shoulder.

I was consistently told that shouldn’t have happened, but instead of trying to figure out how or why it happened, I was told over and over again that I must have torn them before the accident. I was mistaken and I didn’t even know it!

A year later I was diagnosed with widespread arthritis. Every joint that has been imaged shows bone spurs and other damage.

The Point

So, why am I telling you all of this? Because I finally have found what I believe to be my diagnosis: Ehlers Danlos Syndrome (EDS) with Postural Orthostatic Tachycardia Syndrome (POTS). Both explain all of my symptoms and both are considered rare. In reality, it seems that they are just under-diagnosed.

I get emails from The Mighty and actually cried when I read this article. In it, I saw myself and my life and I realized that there was a reason for my symptoms. It’s hard to not feel like a fraud when you’ve been called one your whole life. I’ve been dealing with Impostor Syndrome for years now.

Am I a hypochondriac? Am I creating these problems in my head? Do I just want attention?

I felt like I was losing my mind. I stopped even talking about new symptoms (like the all over bruised feeling I have right now) because I knew that everyone around me was tired of hearing it.

I stopped telling doctors about new symptoms because I knew they would just brush them – and me – off.

I am debating even bringing up the connection between my symptoms and these disorders. I fear that I will be told to stop Googling things and to leave it up to the professionals.

The problem is, though, that the professionals don’t want to listen to me. It’s easier for them to brush me off than it is to research my weird symptoms. Even if these disorders are rare, someone has to have them, right? A perforated ulcer is rare, but I had that.

I work in this field and I understand – to an extent – the frustration surrounding people self-diagnosing. Most people don’t have the educational background to decipher information correctly or they find themselves in echo chambers of mis- and dis-information. So, I get it.

I also understand that doctors today are overworked. There is a shortage of physicians and as of May 2018 they had the highest suicide rate of any profession.

Electronic medical records are causing all kinds of problems for them and it is severely interrupting their ability to focus on their patients. They spend the vast majority of their day charting nonsense to keep insurance companies happy – they don’t have a lot of time to brush up on rare diseases or random symptoms. I get it.

The issue is that when someone deals with a lifetime of unexplained symptoms and then discovers that they can be explained, they should be listened to. I could be wrong. I could have something else entirely. But that doesn’t negate my symptoms. Even if you’re busy, please just listen to me.

I wouldn’t attempt to diagnose myself if doctors would do it for me. Instead, they pat me on the head and send me on my way with no answers, just more doubt. Or, they give me the good ol’ ¯\_(ツ)_/¯ .

You may wonder why a diagnosis is so important. It’s because it’s validation. It’s vindication. A diagnosis says that I am not a hypochondriac. I do have a problem. Diagnosis leads to treatment that can lead to better quality of life or even cures. Without diagnosis we are left stagnant. Being brushed off and passed on from specialist to specialist to be told there’s nothing they can do.

All I can hope for is that my doctor listens to me when I see him next.

3 thoughts on “Searching For A Diagnosis

  1. Great post Hillary! I find doctor’s only hear what they want to and they tend to not listen to us and we are the ones that our own body! Thank you Hillary, you always share the most knowledgeable and amazing posts!

      1. I honestly feel that doctor’s have lost focus as to why they became a doctor in the first place. I strongly believe that healthcare in the states is only becoming worse and that is sad!

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