Part of Who I Am

It’s been a long time since I’ve posted. I wish I could say this will be about my writing process or successes. I actually have no news in that area, unfortunately (if you don’t count that I am still in the trenches of my paranormal YA rewrite, and that I will be attending Colorado Gold (writing conference) again this September–where, after much deliberation, I have decided to pitch Hemlock Veils to the head of a very promising publishing company, mostly to open a discussion about why publishers don’t typically commit to republish a story that has previously been published with a different publisher, but then rights got reverted).

But that is beside the point. Today, I need to declare something. I need to share an aspect of my life that has become my life in recent years. I need to be honest, with myself, mostly. I started typing this as a mere Instagram post. But then when it stopped me at the character count limit, and I still had so much more to say, I realized this particular line of thoughts–which I desire to share with the entire world–should instead be a blog post.

A permanent fixture on this website that is all about me.

Sure, it’s about Jennie Ritz, the author. But even the author part of me is greatly affected by this. It is, in every aspect, part of who I am.

For the past 15-ish hours, I haven’t been able to stop thinking about my illness.

My disease.

*releases breath*

I didn’t even know ME was a technical disease until I first heard of its official medical name (Myalgic Encephalomyelitis) about four years or so ago. Yet I’ve had it ever since I was 15 (for 21 years). This condition the CDC now recognizes as a real, actual illness/disease, affects millions of people—all of whom would show abnormalities in their genetic testing, if they were to get any done (or so the ever-evolving research says).

A disease. A new disease (only been a thing for 25-ish years), but a disease nonetheless. Before, when I was first diagnosed with Chronic Fatigue Syndrome (before being known as ME, it was a mystery condition called CFS–a diagnosis sometimes handed out when doctors couldn’t figure out what was wrong with their patients, and everything else had been ruled out), the medical community’s semi-recognition of CFS—thoroughly fueled by eye-rolls—was lacking and insulting. But, it had been rumored as a possible condition for only four years at that time.

Which means I was quickly made out to either be 1) a complete mystery no one wanted to solve, or 2) a joke—a hypochondriac making up symptoms that may have been true in her own head, but that were not true in reality.

Image result for mecfs

It was so crippling. To say the least.

So, after two years, I buried it and pushed through, pretended I didn’t have it. I never spoke of it, never mentioned it in my medical history, in any situation, etc. I know what some people thought of it (even people whose opinions I actually cared about). So, my brain said, I would rather be viewed as weak, than be viewed as a joke. And view me as weak, they did.

Even while at my fittest, healthiest spot in life (between ages 27 and 30), when I was running every day and kicking ass, I couldn’t do as much as normal people. If I was a normal person, I would have been running five miles every day, rather than the normal one to two (It took a very long time for me to be able to go even that far). I didn’t have the endurance of my partner and peers, despite being healthy and in the best shape of my life. I still had very low limits, and dealt with PEM (post-exertional malaise) from time to time. And therefore, I was viewed, by some very close people in my life, as weak.

Non-sporty. Lazy. No drive or endurance.

Thinking of this now fuels me with so much eye-burning injustice–especially because now, I can admit to myself the truth: that I endure and fight harder than most [expletive] people, and always have. Never again will I believe those lies, even if it’s my own brain telling me them–my own brain falling into old habits and listening to the ghosts of old memories.

Anyway. I didn’t even admit to myself again that I had it until I turned 30–when my health went down the shitter and my Fibromyalgia showed up. Because when that happened, my then-CFS-to-me went into panic mode and attacked, returning as badly as my teen self once had it. It was only after one or two years of a lot of heartache, loneliness, and poor treatment from a close loved one who believed it was all in my head, that I stumbled upon the ME online community and the chronic/invisible illness online community (“spoonies”).

Only then did I realize that HOLY CRAP, I AM NOT ALONE! That realization was such a needed breath of air for me. It was the start of my journey to accepting that what I have is REAL.

None of the doctors I’ve had as an adult have ever heard of ME (though they all have heard of the dreaded, “only-theorized” CFS). It’s one of the hardest things to deal with—being so chronically ill and having no support or validation in the medical community. It’s not fair.

But, thankfully, even though my current physician had never heard of it before me (I had to give her the terminology, symptoms, etc.), she did/does believe me. It’s the most I can hope for. She does what she can to help me relieve my symptoms, whether that be through referring me to pain specialists, PT, etc. or through drug trials (I think we change my medications routine every single time I meet with her). She actually has it in my chart that I suffer from this. She actually supports the diagnosis I received when I was 15–by a doctor who (and I thank the heavens for this) just so happened to be current on the new medical conditions/trends.

The ME online community is so fantastic. There is so much support, so much action being taken to normalize it and spread the word—to bust all myths and prove its validity. I couldn’t be more grateful for this. It has truly, in every sense of the word, saved me.

However, last night, while I was in bed and completely out of it, I saw a comment from a random person I don’t know, on a Fibromyalgia post…and it triggered me, I guess. She was saying things about ME that I had never heard, and was spreading (false) information about how it is being treated in the medical community now. It hit me hard, sunk my heart. Rather than question the things she said, and rely on my vast knowledge on the topic, I instantly believed her–someone who doesn’t even suffer from the disease–and then worse, I internalized it.

It was on my mind as I fell asleep last night, eating at my half-aware brain. So, with all the mental energy I could muster, I made a mental note (one that I hoped I wouldn’t forget) to do more research on it in the morning.

It was then with me as I woke today, and the misinformation left me feeling so heavy, and like such a fraud again. Like maybe–once again–I may have misdiagnosed myself all these years, and I was just simply wrong. I probably don’t even have ME, I thought. Because if this woman was right, it has now transformed into another, different disease, one of which would reject my symptoms.

Another failure, another false hope. Another visit to the mental place in which I loathe being: drowning in self-doubt and haunted by the completely crippling question of WHAT IS WRONG WITH ME? And How did I miss these things all these years?

This lady’s words affected me so much that I was scared to do more research today, because I didn’t want her claims confirmed.

BUT, I can so happily say I have done the research, and instead, I am fulfilled and validated. All I did was read the official sites that I’ve already read many times. To see if there was something I missed. To see if there was some breakthrough finding in recent months (there wasn’t).

Long story short, the lady was very wrong, and I have been right (about my own disease) all these years. I wish I could remember what post it was on so I could go back and correct her—clear it up for anyone who might be reading it and doesn’t know much about the disease. And I just wish I could trust myself. My knowledge. My awareness and intuition. I know my diagnosis. And I hope this experience has taught me to trust it, rather than to listen to the demons of PTSD.

I guess my entire point of this story, and this post, is to prove that I am finally, after all these years, able to say to the world, without a doubt, “I have a disease.” It’s invisible, but it’s a disease. It’s a baby in the medical community—new, lacking lots of answers/research, and still unknown to many, if not most, American doctors.

But. It’s. Still. A. Disease.

I will probably never know the why’s and the how’s, and if it can ever be cured or managed; we are still miles away from that in research, even with their great progression. Those answers will most likely not come in my lifetime. And that sucks, so much.

But I’m just grateful to finally have a name for it. A little validation and recognition. Confirmation that it’s not all in my head. And I’m grateful that for sufferers in the future, they most likely won’t have to experience the challenge that we–current ME sufferers–have.

So, though this is a little late: I’m Jennie, and I have a disease called ME.

***

Want to know more about ME? Visit the following site:

https://www.meaction.net/about/what-is-me/

4 thoughts on “Part of Who I Am

  1. Thanks, Jennie. I’ve been following you for a while on various platforms, mostly as a fellow writer but also as a fellow spoonie. I have been undiagnosed for five years (my symptoms came on suddenly and severely) and at this point I just want a diagnosis – ANY diagnosis. I think ME fits but my dr finally just agreed to look at autoimmune and complex, multi-symptom syndromes. So we shall see. Don’t let the trolls get you down. You know what you know! I always admire how you show up for your editing. You are definitely making something happen!

    Liked by 1 person

  2. I’m so glad you’ve been able to come to terms with your illness. It is so hard to have an invisible illness and know that no matter what you do there are people who will always look down on you. I struggle with fatigue related to my mental illness and I know even I doubt myself sometimes. It’s easy to do. Keep on keeping on.

    Liked by 1 person

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