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.

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/

Freshly Painted Walls

Inhale the scent of freshly painted walls.

Exhale the tears.

Words and thoughts are stopped up inside, as though she has forgotten how to be. What is actually wrong? What causes this breathless sobbing, this hatred of self, this feeling that every ill is deserved?

The answer evades her, and the answer-less question pulls her under.

And quitting. It sounds nice.

More than nice. It’s something she years for, aches for. Quitting–she would take it in the form of death, or even just an accident. Like falling down the stairs or getting hit by a car. But the children?

She could never do that to them.

Therefore, suffering alone is her only option. The only option in which she gets what she deserves.

So continue crying in the bathroom, weak one–against the freshly painted wall. But be quiet, for the children might hear.

The Good, the Bad, and the Dirty of Electronic Communication

In our modern day and age, we live, thrive, and survive on electronic devices. As most adults of my generation or older, however, we know what life is like without electronic communication because we were raised in a time before they were commonplace. For some of us who fall under that category, there is the belief that we don’t need them because “back in my day, we got by just fine without them.”

But is that belief, or statement, true? Can we really get by just fine today without electronic communication?

No matter how supportive you are of electronic communication, you can admit that there are negative sides to it. For instance, personal family relationships can be strained. We all know about the family sitting at the dinner table in silence, the only sound being that of beeping or clicking phone screens or electronic devices. While I believe this can be harmful to personal and family relationships, I also believe that putting the blame on the devices themselves is counterproductive and naïve. Let’s put the blame back where it lies: with the people who don’t have enough discipline to put them down, or make their children put them down, during personal, critical moments. Set rules for yourself and your family.

We all know of the additional argument that electronic devices distract people, especially while driving, and cause harm. Someone walks into a pole while walking and texting. Someone crashes while driving and texting. We hear about this happening, so we know it’s an issue. But again, don’t blame the device. Blame the person.

One reason people see electronics as a problem is that people become dependent on them. Again, not the device’s fault. Let me shout it once more, for those in the back: IT IS NOT THE ELECTRONIC DEVICE’S FAULT.

Then there is the issue that people aren’t living in the here and now, because they’re always trapped in their devices. I have an opinion on this. My boyfriend and I went to Kauai, Hawaii last spring. It is breathtakingly gorgeous there, as you’d expect. One line of advice I got from someone before I went was to “unplug.” To be there, live in the moment, soak it up.

Well, for me, part of living it is documenting it. I have a horrible memory, especially since getting my chronic illnesses five years ago, and if we had not taken as many pictures as we did, there is no way I would have remembered every inch of that island we toured. We documented it, every last moment, so that we could go back later and relive it.

Another way electronic devices can be beneficial is the communication it allows us to have with people all across the world. Technology isn’t evil, contrary to the belief of some people I have known. Nor is social media. If it weren’t for social media, I never would have met other writers, I never would have met others with chronic illness, and I would never have landed my first publishing contract. I would have remained solitary. I would have continued thinking I was alone in this world, as a writer and a sufferer of chronic illness. My internet people—my support system—are the only way I made it through some very trying times a few years back.

Don’t ignore your family and friends in your immediate life. But it’s okay to spread your wings and meet other people from across the world—people like you, going through the same things as you.

On that note, I would also argue that social media and electronic communication is great for keeping in touch with those family and friends in your immediate life, too. For someone like me—an introvert who is deathly afraid of talking on the phone—social media and texting has been the best thing for keeping family relationships alive. Especially when you live states away from those people.

And speaking of being deathly afraid of the phone, I have to praise the convenience of texting. I mean it when I say afraid. My social anxiety is at maximum levels when having to speak on the phone with someone. Put me in front of a crowded room and make me give a lecture, but don’t make me talk on the phone (and that says a lot for me, given that I’d rather eat bees than give a lecture). I get shaky, I get palpitations. I sweat. I can’t focus. I’m telling you: texting was the best invention. So next time you decide to dog someone for preferring to text over call, or you think it’s too impersonal, remember that there are people with serious anxiety disorders that prevent them from calmly being able to tackle the same everyday things you can do.

By now you probably know what my conclusion is on this subject. I think it’s impossible to be in this world we live now days without relying on electronic devices. It’s the modern time we’re living in. I’m not saying I think everyone should give in and buy that tablet or iPhone. I’m just saying to stop griping about the people who do use them. If you want to be a part of this world we live in, and you want to succeed, electronic devices are necessary.

Be responsible, of course. That goes without saying. You have control over how often you use the device, when you use it, and how dependent you become on it. Enjoy what technology has given us. Connect with people. But be smart.

Stop Selfie Shaming

Yes, I’m writing a blog post about selfies. This is more of a rant than anything else, but it’s something I feel I had to say. Selfies have such a negative rap, and I want to change that. Why? Because—and repeat after me—selfies are harmless.

I know! I couldn’t believe it either. But it’s true. Guess what? It’s okay to show the world your beautiful face!

Someone I follow on social media posted a selfie the other day and prefaced it with, “I don’t normally post selfies because I’m not self-absorbed, but…” and I wanted to scream. Not only is that an unhealthy way of thinking, but that is so insulting to the people who do post selfies on a regular basis. You’re calling them out, calling them self-absorbed, when—reality check—most people who post selfies are actually quite opposite of self-absorbed.

Again, I know. I couldn’t believe that either. And I have a deeper opinion on why and who has this unhealthy way of thinking, but I’m not going to get into that.

I know, for myself, I have always struggled with self-image. Always, from the time I was a child, I never felt my physical appearance was good enough, for one reason or another. Long story short, later in life, I discovered that I have what is called Body Dysmorphic Disorder (BDD). I have always loathed my physical appearance, from my ears down to my feet.

And what did I loathe worse than my physical appearance? Pictures of me taken by other people. I always loved being the one behind the camera, the one taking all the pictures. So, usually, that was my job. Which meant that I was rarely in the pictures. I was okay with that, but what I was not okay with was looking back through old photos and seeing the ones I was in, and wanting to set everything on fire, including myself.

Let me tell you, I am not a photogenic person. No matter what, every person who has ever taken a picture of me has always managed to get a bad angle, a bad smile, catch me in the middle of an awkward expression, etc.

It wasn’t until a few years ago that I realized I could take a picture of myself, and I could control the angle. I can still have pictures of myself, to document different stages of my life, without wanting to set everything on fire.

It was quite a liberating experience. I imagine it is for many people, not just those who suffer from BDD or similar issues, but for your average, run-of-the-mill person.

I take selfies because I don’t think there is anything wrong with finally showing the world who I am. I take selfies because I want to feel empowered. I take selfies because pictures of me with bad angles make me want to—you guessed it—set everything on fire. And I don’t like feeling that way.

Who says we need to keep our faces behind the camera? Who says we need to hate ourselves? I’ll tell you who: the people who think selfies are self-absorbed, gratuitous, and wrong. How about instead of looking down on people who post selfies, accept that that person is probably really struggling with their self-image and it took a lot for them to show the world. Or maybe that person isn’t struggling with their self-image at all. Maybe they just want to show the world who they are.

Guess what? THAT. IS. OKAY.

Time to drop the archaic way of thinking and accept that we, as human beings, are all unique and beautiful individuals, and some of us want to show that to the world. I, for one, love selfies. Keep posting them, people. Keep showing the world who you are and stop being ashamed of it.