When Friends Suggest Your ‘Devastating Dizziness’ Is All in Your Head

I know, I know, “It’s all in my head.”

You’ve heard that one before, right?

Literally though, for me it is in my head. For the past decade, idiopathic intracranial hypertension (IIH) has turned me into 100% that “dizzy b!*$h.”

More precisely, my dizziness, headaches and visual disturbances are the result of an increase of cerebrospinal fluid (CSF) pressure inside my noggin. Thus, IIH.

See? All in my head.

But that’s not what people mean when they gossip about what I’ve been through. They’re suggesting my symptoms are more mental than physical — that I’m using my dizziness as an excuse to get out of doing things, as if I’ve suddenly ceased to be a fun person who likes doing fun things.

Those off-base, uninformed opinions are incredibly hurtful because most people don’t have a clue about what the road to a proper diagnosis was like for me, nor what life has really been like after.

IIH is a rare condition and I happen to be among an even rarer subset of patients who don’t present with the typical symptoms of my disease.

So for a year and a half after I first became dizzy (a symptom that isn’t always quantifiable on a blood test or MRI), common signs of IIH repeatedly failed to show up on my exams.

But holy sh*t was I dizzy. I had to nestle up against walls when I walked down hallways, grip the sides of my desk in class and hold onto anything steady whenever I had to stand upright and still for longer than a few seconds. I constantly felt I was about to tip over.

Despite how persistent, aggressive and debilitating my dizziness felt, the fact it was met with so much indifference by certain people in my life caused me devastation on a whole other level.

Not only was I petrified about the unidentified source of my symptoms and its potential implications for my overall health, but after every time I left the doctor dejected and answerless, I came back into the real world to face questions and doubts. Because if you go to the doctor for over a year and they can’t find what’s wrong with you, that must mean there is nothing wrong. Right?

Nope. Sorry haters.

My doctors were always gracious and if they ever had doubts about me they never let on (I have other people in my life to thank for that). Sadly, a handful of friends (and a few relatives, too) insisted upon cloaking every conversation about my physical health in disbelief and doubt. That unnecessary drama added another layer of stress to my life, which my emotional well-being definitely didn’t need.

While I was going through the most traumatic time of my life, so dizzy I had to drop out of college, couldn’t work and was nearly glued to the couch (horizontally because that was my least woozy position), I also had to deal with the fact that people I’d considered friends didn’t believe I was experiencing any physical symptoms at all.

And it wasn’t just that those friends didn’t believe I was physically ill. It was the realization that they thought I lacked so much integrity that I was capable of orchestrating such a scheme and I would, for some reason, have the desire to quit living in and contributing to society. They had such little regard for me that they could even entertain the notion I would choose to give up my independence, go broke, drop out of college and derail my entire life’s plan. For no reason.

As if.

They don’t know me. Anyone who could believe such nonsense about me obviously doesn’t really know me — never did. Because of that, I ended up cutting several of those so-called friends out of my life. As hard as it was then, I know now it was the best decision I could’ve made. My devastating dizziness cleared up who is really here for me in this world and who isn’t — a nice unintentional benefit of a crappy situation.

Finally, after a year and a half of repeating the same tests and getting the same clear results, my neurologist suggested I head in for a spinal tap. That test was what finally identified my elevated CSF level and the cause of all of my problems: IIH.

Now that I’m properly medicated, I still deal with symptoms of IIH but to a lesser degree. I remain unable to participate in life the way I want to all of the time and I’ll never be the “before” me again. But I’m improved from where I was and I’m forever grateful for that.

My biggest lesson out of this whole ordeal has been that I need to advocate for myself and surround myself with genuine people. The new friends I’ve made since IIH, and the few who’ve stuck by me from the beginning, are what true friends look like. When they ask me about my health, I can tell it’s because they care about me and want to know if they can help. Not because they doubt me.