I question who I am…

Have you ever felt lost in your illness? 

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Lately, that has been me. Lost. Both January and February beat me up pretty badly. If anything could go wrong, it did go wrong. It’s like I could not win, no matter what I did. And the more I tried, the more things went wrong. Problems with testing, issues with doctors and medical records, trying to fight 3 disability cases at once, managing to keep up in school (barely), and a myriad of symptoms coming down on me at once. Just thinking back on it makes me tired. Not to mention, it was also the 12th anniversary of my mother’s death on February 25, which also happens to be my husband’s birthday. Needless to say, I’ve been busy.

Likewise, I just surpassed the one year anniversary of when I left my job to go on medical leave, only to get fired from my job a few months later because I wasn’t able to tell them when I’d get better. The harsh reality was – I might not ever be better. And we still didn’t have all the answers. Even now, there are still so many things in the air.

Somewhere, between all the frustration I’ve felt over the last few months, I suddenly found myself feeling really sad and hopeless about my illness. It had officially worn me down and for the first time in over twenty years, I had to admit – I was depressed – and I hated myself for it. So here I was:

A Warrior. A Fighter. A Hypocrite?

This must be a bad joke. After years and years of trying to prove that my symptoms  were not caused by depression and I now have to eat my words. Great – What else could go wrong?Just the idea of being depressed made me sick – as if I wasn’t sick enough already. How could I let this happen?  I didn’t want to be that way, but I also couldn’t stop myself either.It made me question my sanity. What if I was actually sick from depression? Maybe it has been depression all along?

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I honestly didn’t know anymore. The sadness from somewhere out the blue and overwhelmed me so fast that it scared me. I was too tired to fight, though, I already had too much on my plate. I decided to accept the feelings and let them in. Literally speaking out loud, I just said fuck it – I’m depressed! (excuse my french) and I wallowed into the depth of self-pity for a while.

Hiding from my husband in the wee hours of the night, I’d obsessively search  Youtube for the saddest songs I could find, you know – the ones with the saddest lyrics and heart-wrenching video to go with it. I’d hurl myself in the bathtub and simply cry. And not just cry, I would sob – snot and everything.

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It was on one of these nights, not long after I wiped my tears away for the night, that it happened – I finally broke.

 Honestly, it’s hard to remember the explicit details of that night, but they really don’t matter much anyway.  I do recall, though, that the salt on my skin was still fresh enough I could taste my sadness with every breath and exhale. It made me feel nausea. Who knew that only moments later, I would be drowning in my tears.

Still, the fact of the matter is that someone very close to me said some of the harshest words I had ever heard about both me and my illness to date. And these words cut me much deeper than anything ever had before. Which, I have to tell you, is not an easy task considering what I’ve gone through trying to get a diagnosis for all these years.

I just simply shattered.

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A lot of things were said that night, but one thing, in particular, stood out to me. I couldn’t get it out of my head, either. Those words became an obsession and I have no idea why. Worse things were said throughout the course of that evening, things that should have hurt me much worse. But yet, these words were like a broken record to me, playing the same terrible song over and over.

“You aren’t the hero that everyone thinks you are…”

Ouch. 

I know this probably sound silly to anyone reading this, but it wasn’t to me. To this day, I still don’t  understand why this hurt me as bad as it did. I can laugh off being called crazy. I can ignore being told that I am either this or that. I don’t care who does or does not like me. Trust me,  I have way more than enough to worry about. Perhaps it was because this person questioned my self-worth or purpose, the reasons I continue to fight and on why I keep searching for answers. It made me not only question myself and my sanity but everything I have worked so hard for up to this point – including this blog.

Who am I to share my story? 

I’m just a fool. A hypocrite. A fake.  A phony.

Does anyone have a rock I can hide under?

It took more than a few weeks for the replay of that night to finally stop playing altogether – that person and I made up long before I  recovered from this event. Like I said, I just couldn’t let it go.  I needed a revelation.

It was after another night of crying on the bathroom floor, wallowing in self-pity as usual. You know that moment when you think of something super funny or smart to say, but it’s already after the fact? And you become mad at yourself because you didn’t think of it at the time? And now you wish you had something instead of standing, looking stupid? This is exactly how I felt.

Wait a minute – I never called myself a hero… ever

I call myself a warrior – The Undiagnosed Warrior – to be exact.

There’s a difference… 


Simple Definition of hero

(From the Merrium-Webster Dictionary Online)

  • : a person who is admired for great or brave acts or fine qualities

  • : a person who is greatly admired

  • : the chief male character in a story, play, movie, etc.

Simple Definition of warrior

(From the Merrium-Webster Dictionary Online)

  • : a person who fights in battles and is known for having courage and skill


That’s it – that’s exactly it.  How did I not see this before? 

Think about it for a moment…

In modern culture, most people hear the word hero and picture a big strong fireman that rescues an entire family from burning house. He even saves the family’s dog. He’s a hero… What about all the other people we look up to as heroes?

  • The people who do extraordinary things while battling cancer? Lance Amstrong, for instance. He accomplished so much while battling cancer. He’s a hero…
  • What about Spiderman or Batman? They’re called super heroes.
  • U.S. soldiers and veteran?  obviously heroes – they have fought/are fighting many battles for our nation. Many sacrificed with their lives.

There are so many examples and they have all done amazingly brave things in their lifetime. They are heroes in the true tdefinition of the word.

Admired. Brave. Great Acts. Chief Male Character.

 Of note: not every example is meant to exaggerate the gender bias (insert he or she in all the examples above). That’s not the point I’m trying to make, although men generally do come to mind first when thinking of the word hero. Hell, it’s even in the definition… but I digress. Not that there is something wrong with being called a hero, but heroes generally look for personal victories and  fight to win – and that’s just not me at all.

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 So, what about warriors?

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The title of a warrior is much more appropriate, don’t ya think?

For example, a warrior…

  1. Fights in battles…
    • against their own body – every single day.
    • just trying to live  a normal life – as much as physically possible, anyway.
    • to simply keep employment.
    • with/against doctors and other healthcare professionals – it can go either way.
    • with insurance companies – just to receive lifesaving treatments or medically necessary tests.
    • against disability.
    • against disability insurance companies or social security.
    • to spread awareness through advocacy.
    • to develop a treatment plan.
    • to hopefully one day find a cure.
    • sometimes just to get a diagnosis.
    • to keep relationships with both friends and family.
  2. Has Skills…
    • such as getting a full workout just in standing up.
    • such as being proficient in first aid
    • to predict the weather based on how we feel.
    • of adapting to various situations, no matter how awkward.
    • consisting of medical knowledge in almost every field of medicine available.
    • of balancing too many things at once.
    • in knowing where every bathroom for the next 20 miles is (and how clean they are).
    • like being able to sleep anytime and anywhere.
  3. Has Courage…
    • to live with the unknown.
    • to have test after test, even if they’re painful.
    • to get out of bed, even when not feeling good.
    • to face the things that scare them.
    • to keep searching for answers and uncover mysteries
    • to go to doctors appointments, even when they’re told their symptoms are in their head.
    • by keeping the faith.
    • in knowing there is a larger purpose for being sick, even if they don’t understand why yet.

Again, I could list thousands of examples for each, but you get the point.

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Who cares if I’m not the hero that everyone thinks I am? 

The world needs more warriors anyway…

Needless to say, I didn’t feel so sad anymore. In fact, I actually felt pretty strong – and maybe even a little proud of myself. The depression had lifted and I was me again.

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32 thoughts on “I question who I am…

  1. chronicallysarahlynn says:

    Wow, that was a super harsh comment for that person to say to you. I love the spin you put on it though in making the distinction between hero and warrior. I felt empowered reading that. You absolutely should feel proud of yourself. With all that you’ve been through and all that you’ve fought for and are still fighting for, you never give up. You are one heck of a warrior. Keep fighting!

    Liked by 1 person

    • Undiagnosed Warrior says:

      Thank you. I did feel pretty bad at first obviously, but I know I’m not perfect. I’m not doing anything extraordinary, I get it. Still, I know how hard I “work” every single day. No, I don’t have a job currently and that does kill me, but being sick is like having a second full time job most days. As they say, people don’t get it unless they get it.

      Like

  2. Alicia Reardon says:

    Sending you much love and good healing vibes! I’ve been in your shoes and I’m still there. Although I got diagnosed quicker than most thanks to a hard headed Mother and a family physician who wouldn’t give up.

    Trust me, know matter what, when you have an invisible illness or an undiagnosed illness you’ll always have someone giving you crap over something. Especially doctors! Once doctors start questioning me or treating me a certain way I walk out the door and never come back. I don’t take any of that from any physician. I need a medical professional who is going to listen, understand or at least try and understand my condition.

    By the way, anyone who’s diagnosed with an illness especially like mine or what yours may be. Is likely to develop depression over a period of time it’s totally normal. Ain’t no shame in it. Over the years I’ve developed Major Depressive Disorder along with Anxiety. So it happens, but when it does. Do what you just did let it out! Write it out! Paint it out! Whatever you needed to do! And we all have haters! Just brush them off because there is no way they can really understand what you’re personally going through unless they do it themselves.

    Oh and I took a glance at your symptoms. It’s possible you have multiple medical conditions. Have any of your doctors given you a halter monitor, one that you would wear for 30 days. Maybe even given you a tilt table test? Speaking from experience and those list of symptoms I’m suspicious…

    Liked by 1 person

    • The Undiagnosed Warrior says:

      So true Alicia. In finding it is better to walk away then sick with a doctor who will never take care of you anyway. I’m glad you had good advocates behind you, it definately helps.

      As far as conditions go, they’ve diagnosed multiple rare conditions at this point, including POTS, but some things are still left in the air. Until theyre figured out, there’s no treatment plan which is hard. I’m behind on updates but hopefully be able to add those soon. 💜

      Like

  3. Alicia Reardon says:

    Have you ever heard of DYNA (Dysautonomia Youth Network of America)? Since you have POTS there are tons of resources there that you may find helpful. Also, one of my physicians wrote a book on Dysautonomia called The Fainting Phenomenon: Understanding Why People Faint and What to do about it. It’s a really good book and it’s helped me in the long run and helped those around me as well. If they ask me what my illness is I just direct them to DYNA’s website or let them borrow Dr. Grubb’s book. I’m like “I don’t have time to explain this it’ll take me all day and then you’ll still be scratching your brain after I’m done”. My shortest explanation is I’m an astronaut who doesn’t have to leave earth to feel the effects of antigravity. XD

    Liked by 1 person

      • Alicia Reardon says:

        Dr. Grubb is an amazing doctor, so is Dr. Karabin, his nurse practicner. If you have POTS and your doctors just don’t know what to do that’s who you need to see. Of course there are some other amazing Doctors out there as well.

        And yeah the astronaut thing. What most people don’t know is that when they come back, because they’ve been in space with no gravity their bodies have to get used to it again. Case in point, they have instant Orthostatic Intolerance. They are literally rushed to these special chairs that recline so far back their legs are at the proper height above their chest. They sell them on the market know actually. They call them Zero Gravity chairs or something like that.

        Liked by 1 person

  4. Jen Ashley says:

    Wow what an insightful soul revealing post. I could almost hear thru you words that you are learning to speak you truth. So keep up the momentum and don’t let anyone slow down the journey to self-love thru accepting what it is you can change, and should change, as compared to what is beyond yr reach and those things we need to accept and move on.

    Liked by 1 person

  5. drealita says:

    Beautiful writing and self reflection! This struck me really hard today as I’m also feeling that loss of the person I once was and wondering who I am now. I’m a warrior most days, some days a wilted flower struggling with a drought, but never giving up to rise in the sunshine! Cheers to you!

    Liked by 1 person

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