Deep Meme-ing : Mental Health Awareness

This tweet has been circulating in a variety of formats:

I lie about being ok.

I have a suspected vascular compression syndrome. It’s rare. We’ve seen compressions on my left renal vein, and my aorta and superior mesenteric artery squeezing my duodenum. I might have pelvic congestion syndrome as well. Nobody, even most folks in the medical field, know what this all is or are confident in the available treatments. This is the physical context from which my mental health stems.

And I will lie to you about it all day.

Those photos were taken seconds apart. I will never let you see it.

Any time I tell you I’m “alright,” “ok,” “fine,”, it’s a lie. Suffering is normal for me because of my illness, so perhaps, in some ways it’s not a lie. Though, my “normal” is your sick day so I feel like I’m back to lying again.

I don’t like being honest about how I’m feeling for a variety of reasons.

Talking with others about my situation and witnessing their response reminds me that my quality of life is greatly diminished compared to most folks. They don’t even have to say anything and it doesn’t matter if they’re wearing masks, I see it in their eyes.

I’d rather not be reminded the status quo of my life, my everyday existence, immediately evokes a sense of sorrow, loss, pity, or fear in others.

I can find happiness and peace and a sense of normalcy day to day because, for me, all the pain and nausea and exhaustion and my heart pounding all over my body and lack of energy IS normal. Having to lie down after eating or simple tasks because I’m hurting, out of breath, or feel like I’m going to pop a balloon in my gut IS normal. My physical health is absolutely affecting my mental health (and vice versa given the vascular and gut connection when it comes to mental stuff. There’s no real separation between physical and mental health).

Point is, I don’t like lying about it. But it’s a lot easier just to say, “I’m fine,” and move forward with the conversation rather than risk hearing, at worst, assinine or, at best, unwelcome advice, and subsequently suffer the sensation of depression when confronting my lived reality and the bubbling self-doubt in the aftermath of remembering all the medical gaslighting, spiraling, questioning my own sanity because some authority figure doesn’t think I’m sick or doesn’t know what to do and is too chicken-shit scared to say that and admit some sort of intellectual vulnerability. And my life lies in the hands of this chicken-shit scared human who is so delusional they can’t even admit they don’t know something, that they don’t know or have an answer for everything. I don’t want all that b.s. creeping into my mind because someone wants an honest answer to the simple opening question in a conversation: how are you feeling?

It might be better if you didn’t ask at all.

Most of the time, particularly men or folks who like to model what we generally understand to be a “male dominance” style in Western culture (but this is also true of the “overbearing mother” style) want to fix stuff. They offer solutions, they say things will get better, that it will all be ok, that this new doctor will be the one to help, or they’ll come up with something magical or meditative or revolutionary and make it all go away. I can hope for that, sure. But to say that it WILL be…that’s a lie. A lie like when I ask a doctor about abdominal aortic aneurysm running in my family and they tell me women do not get them. That’s a lie. Uncommon, rare, unlikely, sure, go ahead and say that. But just because it’s rare doesn’t mean it doesn’t happen. And if you lie to me, why should I trust you? Why should I take anything you say as valuable?

I don’t want to lie to you, but I would rather lie first so you don’t have to. I’ll lie to you rather than witness your pain, confusion or condescending care about a situation you cannot comprehend.

I’m on the frontier of medicine. I’m not a pioneer. I’m an Oregon Trail person if we want to follow that combative, colonial, superiority-based-on-divinity-of-some-humans-over-others/manifest-destiny of a metaphor. One of the articles on Nutcracker Syndrome states that treatments start with “observation” and then escalate to moving/removing organs. We’re one step up from leaches here, people.

Learned things, we have. Geniuses who understand everything about the body, we are not.

It’s amazing how we imagine ourselves as wise, amazing and foolish. And there’s nothing wrong with being a fool unless you refuse to admit that’s what you are.

Y’all really have no idea what it’s like unless you’ve been here (and I hope you never are) and I understand the desire to offer assistance and advice, but from where I’m standing on this particular battlefield, I’m a general and you’re a cadet.

You can’t see my stripes, so I don’t get respect.

Some of the advice I get is the equivalent of a survivalist being told by a boy scout, “Hey, did you know you can build a house out of tarps, ropes, and trees?” Honey, I got all those tools and some you can can’t even name in this backpack and now you’re just one more person wasting my time with things I already know, tried and do.

Now, sometimes, I get surprised. A nutritionist reminded me of coconut water the other day which was a huge “duh,” moment. But that’s a different situation because I’m going into that space specifically to talk about my illness and to specifically ask for advice. I’m prepared for it. I prepared to swim out and dive into that wound. She is a professional and out of the 30–45 minute conversation, that was the only new piece of information I received. This is not to diminish how helpful it was. Now I have two things I can drink: coconut water and Pedialyte. Water alone cannot keep me hydrated. That variation in flavor and experience is a godsend. I was so happy to have spent that time with her. Point is: there is likely nothing you can say that I haven’t heard, suggest something I haven’t tried.

I don’t have the energy to smile and nod anymore. I don’t have the energy to bend so folks well-meant but extremely condescending advice goes over my head. I just don’t. Because in this case, now I am also reminded that, once again, I have not been clearly heard or understood. Once again, someone feels their benign intervention in my life is necessary despite my never having asked for it and, at times, not even giving me the time or space to finish the story I am telling before interjecting their clearly superior view. If they did not think they were superior, they would not have interrupted my story. Listening is the precursor to having anything valuable to say. If you can’t pass basic training, you cannot command the general.

So I lie.

Because it’s easier.

If you think I’m fine, we can have a normal conversation.

I lie, so you don’t have to.

At least, if I lie, I don’t walk away pissed off and/or more depressed than when I walked in. At least I don’t walk away lonelier. At least I don’t have to fight that emptiness along with the rest of it.

I wish I didn’t have to lie, but I will lie to you all day to protect myself and whatever peace I can have.