(TW: Medical Trauma, Medical Gaslighting, Mental Health, Mentions of Suicide, Emetophobia.)
I think that maybe I’ve been spending too much time on TikTok lately.
All over my FYP the past couple of days I’ve been seeing videos with a sound that says, “I’m not scared of lions and tigers and bears but, I’m scared of…” and then they insert pictures of the things that they’re actually afraid of. In a way, it got me thinking about how that could possibly apply to the Spoonie, Neurodivergent, and chronically ill folks out there. Because, I mean, let’s face it right? There are some symptoms that we can live with, adapt to, and learn to ignore… and others that aren’t quite so manageable. But that’s something that I honestly think varies from person to person.
I think the perfect example of this is pain. There are just some people out there who cannot tolerate pain of any kind, and when in pain, they will say or do anything that they can to make that pain go away or make it more manageable. And as much as I hate to say it, I think this may also add to the incredibly hurtful and wrong stereotype that disabled, chronically ill, and neurodivergent people who experience, and express pain differently exhibit “drug seeking behaviors” or have substance abuse issues.
Coming from a place of personal experience, I cannot even begin to tell you how hurtful and wrong that stereotypes such as that are to people in my community. I can tolerate pain. I have a chronic, incurable disease, which makes it so that I am literally in pain all the time. Even on my “good days” where I’m not using my walker, a wheelchair, or some other form of mobility aid, I guarantee you that I am still in pain. Most days, my pain sits at a solid 6.5 from the moment I wake up- and that’s before I’ve even left my bed. Because the second I get up, start moving around, or try to do anything else, that number is climbing.
I can function at a 10/10 on a normal person’s pain scale, while someone else would be laying on the floor, moaning, screaming, crying, or even considering suicide. Because I am both in chronic pain and neurodivergent, I don’t show my pain the way that most people might. It’s rare that I scream and cry. Instead, I can compartmentalize my pain, and keep a straight face. My heart rate and blood pressure will be elevated, my breathing will be quicker but, aside from that, I do my best not to show my pain. So, there are times where I’ll go to the doctor and they will ask me where my pain is at, and then look at me like I’m crazy when I tell them that my pain is at an 8.
It may just be neurodivergent masking but, I don’t know for sure. But I do know that if I experienced pain in the same way as everyone else, and allowed myself to throw myself on the ground and scream and cry… nothing would ever get done. I have Grandma to take care of, and my little brother, and the animals. Angel and I take care of each other, thankfully but, even then I do everything I can to not make myself a burden on her.
I take more over the counter pain meds than I should. It’s probably killing my liver and my kidneys but, there’s not much that I can really do about that. It’s either live every day in excruciating pain or do what I can to lessen myself from a 10 to a more manageable 8. Pain doesn’t scare me. Ironically, the thought of not being in pain is what scares mem more at this point. Because I’ve come to this strange part in my disability journey, in which I would know that there is something severely wrong if I weren’t in pain.
Pain, to me, means that I’m alive. It means that my nerves, although irreparably damaged, are still there. They’re still trying their best to function in some capacity. Is it enough? No. But, it still gives me some semblance of normal, and it keeps me just that much further away from potential amputation. Recently, in the Spoonie community, I’ve heard CRPS (the condition that I have) as being described as your body’s pain receptors during a complete meltdown. Overworked, overstimulated, overwhelmed, and completely out of control. And in a way, I can see it. Your body’s pain receptors are on fire, they don’t know what’s going on, or what’s wrong so they’re trying to tell you that literally everything is wrong.
(That’s with the spinal cord stimulator/neurostimulator DRG device turned up as high as it goes.)
The pain is something that at first, I wasn’t quite sure I could manage or live with. It took time, and effort, and a lot of work to figure out what worked for me. So now, I do what I can to manage my pain in a safe, healthy way. But… you know what I can’t handle? Nausea. I just can’t.
Dizziness? Okay. Sure, it’s frustrating and inconvenient but, at least I know that I can sit down, lay down, or close my eyes. I’m going to get through it and be okay. Dizzy spells suck but, they can be managed. Joint instability? Fine. I hate it but, I can wear my braces, wrap my joints, or use my walker, a wheelchair, or some other mobility aid to help me along.
But nausea? No.
Nausea is vicious, and cruel, and there’s not much to be done for it. When I’m nauseated, or God forbid vomiting (at least for me) it feels like it’s the end of the world. Nothing matters to me anymore in that moment. I cannot function. I cannot think straight, or sit still, and the only thing I can think about is how to make it go away. I don’t want to stand up, sit down, lay down. Nothing. Do not talk to me or ask me if I’m doing okay. Don’t ask me if I want water, or ice chips.
Jell-O? HELL NO.
I don’t want it. I don’t want anything. I just want it to STOP.I need it to stop. There’s absolutely nothing you can do for me, and unless your name is Ondansetron or Zofran, I don’t want to hear a word you have to say. It sounds mean, sure, and I know that, but nausea is the one symptom that I just cannot handle. Poke me with needles. Take my blood. Blow my veins. Put me in the MRI machine that gives me panic attacks. Give me a three-day migraine that I just can’t escape, or insomnia. But nausea is one thing that I just cannot handle in any capacity.
There’s something about that head pounding, heart throbbing in your ears, sick metallic taste that tells you that you’re going to throw up whether you like it or not that just does me in. And I think that maybe the one thing that might be worse than the nausea itself… is the vomiting. It feels like your whole body is on fire and trying to rip itself to shreds. You can’t think straight, you can hardly breathe, you’re overstimulated and overwhelmed, and afterwards you’re left feeling like you’ve been run down by a steamroller. It is literally one of the only symptoms that I’ve experienced that, no matter what I do, I cannot ignore it, or push past it.
I simply stop existing as a person when I’m nauseous.
Now, would I say that I’m someone who has full-blown Emetophobia? I don’t know. I don’t think that I’m afraid of vomiting or nausea per say, so much as it makes me incredibly anxious. I hate the way that it feels, and I find it incredibly overwhelming and overstimulating for me. Which I guess by dictionary definition means that I do suffer from Emetophobia? I don’t know. All I know is that it’s the one symptom of all of my conditions that I just cannot handle in any way shape or form.
And the lengths that I’ll go to stop it from happening? Ha.
There’s not much that I won’t do to prevent myself from being in a situation where I’m feeling nauseous or vomiting. There are certain medications that I will refuse at the doctor’s office and hospital, or simply not take altogether whether they prescribe it or not if they don’t accept no for an answer. I’ll do this simply because I know that they make me feel sick and nauseated. Medications like the Sumatriptan that I’m on for extreme migraines- so I save it for only when the risk of feeling nauseated and vomiting are outweighed by the strength of the migraine. Because aside from that, the risk of throwing up or getting that awful nauseous feeling is just not worth it to me. That also means that there are certain foods, smells, perfumes, soaps, and even textures that I will avoid like the plague.
Unfortunately, that means that there are times where I might come off as incredibly rude to some people. While I may respect and understand that someone went out of their way to make me something nice like a loaf of bread for example, the smell, taste, and texture of certain kinds of breads are just one of those things that will make me nauseated. Yes, their heart was in the right place but, I simply cannot. The same goes for certain soaps and perfumes that I just cannot use, partially because of the chronic idiopathic angioedema, and having to be extremely careful with what scents and ingredients I put on my body.
Friendships have unfortunately been lost over such things. I wish that weren’t the case but, it is.
And while, I really do my best not to let these kinds of things impact my day-to-day life too much, or stop me from doing the things that I love and enjoy with the people who are the most important to me… I would be lying to you if I said that it didn’t impact my life at all. Personally, I think it’s one of the struggles that isn’t talked about enough when you get sick, or when you’re not neurotypical. They don’t tell you that there are some symptoms to your condition(s) that are really easily managed, or some thing you can adapt to really easily. They especially don’t tell you that there are some symptoms that, no matter how hard you try, cannot be adapted to or lived with.
There are some things that just can’t or don’t cohabitate well together.
Another thing that I don’t cohabitate well with, although, I don’t think it’s as dramatic as my hatred of nausea and vomiting, is my hatred of the feeling of being overstimulated. For me, I think that it’s too similar to the feeling of nausea, and that sometimes, it even includes nausea. Everything is too bright and too loud, and you’re either too hot or cold at the same time. Your heart is hammering in your chest, and your head is throbbing and spinning, and everything is just too much.
But what about you? Is there a symptom, or even a feeling that you just cannot handle? Why do you think you feel that way? Did something happen to you to make you feel that way, or has it just always been like that for you? Because for me, personally, I’m not sure if anything ever happened to me to make me hate nausea and vomiting so much, I’ve just always felt that way about it.
-Sky
Skyla N. Lambert
Author | Blogger | Bookworm
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