At least I know where you stand.
I told my mom that I rather not have kids also because I don’t want to pass on a genetic condition (I only know of one so far) and one invisible illness that I have to any daughters (or sons for that matter). I would secretly feel bad and terrible. My friends would have to be in my face to convince me I’m not a bad mom, because I would automatically feel like it if they got it. Or if a flare up happens and I would be so debilitated that I can’t move for days. Unfortunately, the sad reality is there’s enough mom shaming going around and I rather not be in the mix. Instead of being loving and supportive despite differences, I’ve seen some pretty vicious comments. (Read my other article on why I don’t want kids at this time if ever).
As you know if you been following me. I love working out, filming, traveling living life. But this inner creature (who I’m keeping to myself for a little while longer), stopped me dead in my tracks and I was out for days. I literally went from working out with Insanity one minute, to the next feeling like someone was stabbing me, shooting me and blowing me with a fire blowtorch/thorny baseball bat the next. Or similar to heated teeth biting into you (like the first 3 pictures below).
My skin was pale and I felt like I was being burned alive about to meet my maker. I wasn’t sure if I needed to come up with ways to tell my friends bye, or what it was (it felt so bad I thought I wasn’t gonna make it).
I will not ever underestimate this creature (I call it creature, name your condition whatever you want). Or take my condition lightly. I make it a point to make the good days count, and to brace myself when that big mean critter wants to come out of it’s rabbit hole.
One of my aunts came in and mentioned that it’s weird that she’s gonna be a grandmother. What should my grandbaby call me?
It’s ok to announce great news like this.
She’s especially been rubbing it the faces of my mom (and other siblings that may not have grandkids) that she’s gonna be a grandmother before they are. That game. Sibling rivalry on a different level. Oh brother. I have to remind them to not give me the grandkids look. Maybe some grand plants or grand cats/dogs?
Back to main story.
Mom: Oh that condition is not a big deal and they have ways to treat it.
I responded by saying: if you never had it, you don’t know what it’s like. It’s easy to dismiss something you don’t understand.
This is the typical responses I’ve gotten my whole life. From school, from people I care about (except my Steve & Amelia and other friends who don’t have Medium. My boos not talking about you. Just read it like your just reading.) The earliest I remember dealing with this was 15 years old (didn’t know how serious it was and what it was for that matter). So I never tell this story, but in school, I felt like pain like someone was stabbing the crap out of me multiple times, and I was nauseous as hell. I just made a conscience decision not to say anything because I wasn’t believed in other areas, so why believe me here, you know what I mean? I figured it was apart of my experience (and maybe I was working out too hard haha). I was officially given a name of my condition at 25 when it stopped me dead in my tracks that faithful March 16th, 2016 day. I’ve been silent for years.
And there’s people out there dealing with invisible illnesses and you wouldn’t even know it.
“You’re just making this up.”
“You’re tough. Keep fighting it like you do everything else”
“If you get pregnant, it will stretch you out and cure you.”
Omg no. (AND a indirect way to try to convince me to have kids. Notice that?)
“Enough motivation and will power will get you through the day"
Wishful thinking. I really wish you could think invisible illnesses away.
“You don’t look sick"
“But you look so young, you possibly can’t be that ill”
“You’re just making it up just to get out of doing something.”
“You don’t do nothing right”
“You keep coming up with excuses”
“Just get up and work through it"
“You’re moving too slow.”
I expect it from the world. And trolls. And some people in my family even.
Shit Medium family. Between me and you. I’m surprised this dismissive response came from my mom though. She hasn’t dismissed anything before (I assume she thinks the surgery took care of it but it didn’t. I got this knot on my side that I named Tuna the III that feels like someone is pushing into me all the time after they cut me open. There’s no cure for my creature and I deal with for life. I miss my pre-surgery body. I wish they can break up the “knot.” )
Yes, your pain is a big deal. You and your pain is valid.
I’m sorry if people dismiss you or treat you like what you’re feeling is not real.
I’m sorry if people make fun of you and exclude you from hanging out. Sorry if no one invites you out to events, parties and such. Sorry if you have to keep dropping going out at the last minute, and your friends get angry because they don’t understand how much pain you are truly in.
Sorry if people call you names (I get called plenty, I’m in the same boat).
Sorry if your condition gets call bullshit. Sorry if you are called weak, lazy, users, slow, and useless.
Sorry if you are ever rushed and accused of being “slow." (I personally think my headaches from hell, brain fog and my dizzy spells in recent months are my creature in a subtle way letting me know that yes b**** I’m still here lurking. Don’t forget about me. People can’t see my dizzy spells, so it isn’t real to them. It just feels like my blood pressure is dropping, and when I turn my head, my eyes haven’t caught up. Or a dizzy hangover.).
Fellow entrepreneurs, sorry if your business partners get pissed off because you have to drop at the last minute because your body won’t let you do it.
Fellow musicians and actresses. Sorry if you have to miss auditions, get dropped from your agencies or have running beefs with your circles because you couldn’t follow through those days. Sorry if you had to delay your music releases because you feel like you wouldn’t have the energy or feel well enough to promote them.
Sorry if you feel like you’re gonna puke and you feel so nauseous that you can’t move. Sorry if your nerves are so high that you get sick. I stopped some meds because I’ve been taking them for too long and it was running up my blood pressure to stroke levels. I don’t want no stroke in my 30s (it’s actually a thing, and they thought about entering me into the hospital if it got any higher). But feeling like you’re going to get sick leaning on a toilet seat on a regular oh boy. That’s a different creature too.
Sorry if people tell you that karma is going to get you, you’re gonna reap what you sow, that you don’t do anything right. Your body is already hurting, and the last thing you need is someone hounding you about everything you’re not doing.
Sorry if your church community tells you to pray your pain away instead of listening to you and your needs. (And sorry if they even suggesting to pray more instead of seeking more help from a therapist if needed).
Sorry if people don’t help you because “you don’t look sick.” Sorry if you don’t feel cared for or supported. Sorry if you ever feel unwanted or if you feel left out. Sorry if your feelings are ignored. Or you felt like you had to keep how you really felt to yourself because you are not sure how it’s going to be received.
Sorry if you feel let down so much that you feel like you can’t trust anyone. Or so much so you feel like you have to numb your feelings to keep from completely breaking down.
Sorry if you feel like your mental health deteriorated to a point where you feel like you have no one to turn to anymore, and the ones that said they will always be there for you gave up on you. And they threw you away like trash.
Sorry if your spirit is crushed and you feel like you will never be the same in this life ever again.
Sorry if you ever felt or currently feel less than.
Sorry if doctors dismiss your pain, people say it’s all in your head, and they simply think popping a pill or a motivational speech will just make it go away.
Sorry if you feel like you have to stay silent because you don’t think people will believe you or you will cause too much trouble.
And many imagine that if someone rests before an outing, they should feel better, and similarly, that if they are having a good time, they must be feeling better. Neither may be true.
I SEE YOU.
I see you (I can’t list everyone here because the list of invisible illnesses is long, but endometriosis, adenomyosis, lupus, fibromyalgia, MS, POCs, rheumatoid arthritis, celiac disease, chronic fatigue syndrome, Crohn’s, and anyone with a chronic and autoimmune illness, depression (or mental illness for that matter). Brothers and sisters I see you. ❤
No, you are not lazy. You are going through debilitating pain that no one understands. No, you are not weak. You’re some of the strongest people I know.
Small wins matter. Getting out of bed is a win. Walking around the block is a win.
Washing dishes and taking a shower is a win.
Setting up the table is a win.
Going to school is a win. Graduating/gap year/trade school/alternative lifestyles are wins. Getting up and getting to work is a win. Starting a business is a win.
I made peace and came to terms that I won’t experience some things in this life. All of my friends graduated before me, will definitely get married and have kids before me (read here for more details lol and also here), etc and I’m ok with this and fully support them. I’m just on a different path and timeline, and not being the comparing or jealous type, I know I’m not gonna do some of those things so I live it through them. And yep, people younger than me graduated before me, and I took them out to celebrate and lived it vicariously through them also. (I’m gonna be the auntie that travels and offers free babysitting when I can.) If I’m not feeling that great just tell me your good news, k? I personally don’t/wouldn’t resent that you’re doing things I can’t at the moment if ever, it establishes some kind of normalcy of life in my mind.
The fact that someone does not feel well does not mean they’d resent hearing about your date or your vacation. Often, that’s exactly what they’d like to hear, as it provides a sense of normalcy or vicarious experience.-https://www.psychologytoday.com/us/basics/chronic-illness
I did gain a scar named Tuna Jr and Tuna the second! And a knot on my side named Tuna the III. I got a special relationship with the name Tuna. I named my tumor Tuna! Because I don’t whine, fuss and complain, people naturally dismiss my inner pain. I have a reputation of putting up a strong front in my circles. I’m gonna keep insisting that you check on your strong friends and ask how they are doing or information, even if they tell you they are ok. If you can sense something is wrong, or if they have a sad look on their face, please keep checking on them, even if they keep turning you down, keep trying. The “strong ones" are the ones people overlook the most. I talked about this in a video actually (Just a warning, if you think what I say in my Medium is wild, my bluntness extends on that channel and I hold nothing back).
I’m a huge foodie (See Instagram for details lmfao). But when that creature happens, I don’t feel like eating (surprise there for some of you). If I end up not eating or can’t keep something down at some point. I want Urban Coal House Pizza and Junior Cheesecake photos until I can get back to the eating circuit.
So what to do when someone you love treats the pain you been through/going through as a joke or not a big deal AND IT IS A BIG DEAL because it hurts like hell.
Basically I’m repeating what you already know (some of these anyways).
- You already know this, thousands of articles say it in their advice column. Find people that will listen without judgment (mine are Steve Bello Acshettle, some of my followers and some friends who don’t have Medium). Find great listeners.
- Join support groups with your specific condition(s).
- If you can (if this is possible) find employers that’s friendly and compassionate toward your condition(s). I will honest and say this one is difficult. All the best on this one.
- You can private note me or Instagram message me if you for support if you feel comfortable. I understand if you don’t because you don’t know me from Adam lol.
- If you can, get a pet. They give unconditional love and will be there for you when people are not.
- Seek help if needed.
- Be kind. You never know what someone is going through.
- Let me know if I’m missing something or typos. Wrote this on the fly.
People with chronic illness rely on loved ones not just for support, but for understanding. There may be times, for example, when an individual may experience grief for the things they feel they have lost, embarrassment about aspects of their condition, or guilt over what they perceive as a burden they have placed on those close to them. At these moments, they may not be seeking solutions, or even a kind word, but just someone to listen.-Psychology Today
This is unlike my mom honestly.
She’s always supported me so this turn of events was weird. I’ll try again later (and let you know if she comes back around). We are currently having conversations about travel destinations. And food. And how to rescue more animals.
She shredded a dead relatives wedding photos and I’m like 😢 ice princess what are you doing champ? Look I’m not planning on getting married either, but I do love other people’s happiness. I do think romance is cute even if I’m not experiencing it myself in the given moment. I got a little sad because the wedding photos were adorable.
Between me and you. She’s been acting weird since my granny died.
Bye for now. :D
It’s 2021 🔥🙌
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Interested in what I done? Check out my LinkedIn profile I barely use lol. I’ll update it to add the new current businesses I’m working on one of these days.