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The Worst Thing To Say

Not too long ago, my pal Stephanie sent me this picture:

And I got a good giggle out of it. Of course, the very first one is what my entire blog and movement is based on. However, reading this list got me a little riled up. I started responding to it (and NO I’m not high on pain meds, just regular crazy).

“You’re just having a bad day.” – “MY LIFE IS A BAD DAY.”

“It must be nice not having to go to work.” “IT MUST BE NICE HAVING A BODY THAT WORKS.”

“If you’d get out more…” “Not sure if sick, or just antisocial…” (I’m just antisocial. I’ll be honest.) ((BUT SHUT UP ANYWAY))

“It’s all in your head.” I KNOW. That’s actually my greatest fear….and greatest hope….” (Being ill induces mind games. What? This post is all about LETTING THE CRAZY OUT.)

“You’re just depressed.” “Yup. Being incurably ill can do that to a person.”

“There are people worse off than you.” “…yeah, well…THERE ARE PEOPLE WORSE OFF THAN YOU TOO, and by the sounds of it I’M ONE OF THEM SO LOVE MEEE!!!”

“You’ll just have to tough it out.” “I’LL TOUGH OUT YOUR FACE!”

And, my personal LEAST favorite:

Whoa, sorry, I didn’t want to have to whip out Insanity Wolf, but you made me do it!

…anyway. Back to my story. So my friend sent me that list and it’s like “lol! So true.” and all that, but then my Doctor managed to TOTALLY TRUMP any phrase on that list, or any other list. So now, I present to you:

THE ABSOLUTE WORST THING YOU CAN SAY TO ANYONE WHO’S CHRONICALLY ILL:

“Well, you’re a medical mystery!”

….oh, great, thanks for that. I’m super glad I got to wait 40 minutes and pay 40 dollars to receive that little gem. However, I was willing to walk with that since by the time I heard it, my mysterious new symptoms seemed to have cured themselves. So even though I know better, I thought I might just try to “tough it out” and see if it goes away.

Well, things have gotten worse, which is bad, but good because it’s brought some possible answers to light. Of course, we know I have endometriosis, but these new symptoms seemed atypical of that. However, new and more frequent pain is beginning to look more and more like endometriosis relapsing/returning. If that’s the case, I have another surgery in my future. I already IRRATIONALLY PANICKED about that, so I’ll refrain from doing so here.

A culprit from the beginning has been Lactose Intolerance. This….would be tragic. I am not exaggerating when I say that my absolute favorite food is cereal with milk. It’s freaking delightful. And if I’m lactose intolerant, I will EAT IT ANYWAY because #YOLO (using hashtags on wordpress: #YOLO again)

A new culprit is a little herbal hippie pill I took a couple of times called Relora. This is just one of those little remedies you can buy at hippie health food stores. My (very sweet and well-meaning) mother-in-law got me some because it helps you relax, and she thought that if I could chill out a little I might eat more and stop loosing so much weight. This is a very valid thought, and I’m sure I would eat more if I was more relaxed. And Relora did seem to help me feel more calm, and get to sleep easier. However, after doing a bit of research, I dug up “gastrointestinal discomfort” as a side effect. My symptoms are waaaay beyond discomfort, but I’m betting Relora didn’t help.

I got better for a little while, and even gained a pound (yay!) but then the symptoms came back and I lost my hard-earned pound (boo). Silver lining, though, is that my doctor wants to see me sooner than planned, which hopefully means answers sooner than planned.

And if he says I’m still a medical mystery, I’m unleashing Insanity Wolf on him.

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About rachelmeeks

My name is Rachel Meeks. I have endometriosis, an incurable pain condition, IBS, a digestive illness, and PCOS, which causes irregular periods and infertility. After keeping my illnesses a secret, I started to get upset about how my fellow sick people were being mistreated because of ignorance. I knew that I'd need to stand up, make some noise, wear my heart on my sleeve, and admit that I am not well to make a difference.

11 responses to “The Worst Thing To Say

  1. “It must be nice not having to go to work.”

    “IT MUST BE NICE HAVING A BODY THAT WORKS.” is a brilliant response. Think I’ll have to include that in my automatic repertoire.

    Wishing you better days,

    Cary~

  2. Sunny ⋅

    I’ve gotten that medical mystery one more times than I can count. For my allergies, though, since ~nobody knows~ why they’re as bad as they are and nobody can get me anything that actually works long term… >.> You know who they need to call? Greg House. 😐

    Thankfully, there are ways around milk intolerance! Like powdered milk and fake milk and almond milk and… Man, you make me wish I had cereal right about now. I hope they find some way to let you keep this! Cereal is one of life’s simplest pleasures!

    I really hope you feel better, Rachel! That seriously sounds like a nightmare to deal with. You’re a trooper, broski.

    • Thanks so much! I know the “JUST CALL IN HOUSE ALREADY” feeling! Luckily, today we found out that it’s not lactose intolerance, so I get to keep my regular milk! Small victory. 🙂

  3. “I’ll tough out your face,” and insanity wolf might be the only things keeping me sane today. Thank you!

    As for the medical mystery comment – I’ll point you toward the “tone.” A “Wow, this is a mystery that deserves attention and my best efforts (or referrals if I exhaust my own knowledge),” is much different than a “You’re a ‘medical mystery,’ and by that I really mean I don’t believe this is really a problem or I might believe it’s an issue for you, but I don’t want to treat an ‘abnormal’ issue or can’t admit there is something outside my wheel house and plan to put no more effort into this.” If it’s the latter and it persists, find a new doctor. Never fun, but you need to build your “team.” (Advice I always need to remind myself of).

    Side bar: Whenever I hear anyone mention tone (even me!) my mind automatically goes to Christopher Walken in Joe Dirt. “You’re talking to me all wrong. It’s the wrong tone. You do it again and I’ll stab you in the face with a soldering iron.” http://www.youtube.com/watch?v=YkeOr720S5w

    As for the lactose intolerance. They believed I was lactose intolerance for years. Lactaid products are great. They are real milk with the lactose “removed” (actually pre-broken down). You can still have your cereal! My Dish actually liked the Lactaid milk better than the regular milk as it’s slightly sweeter (lactose is basically milk sugar). But, before you completely adjust your diet, pocket book, and lifestyle, get tested! That’s right, there’s a test. I rode the lactose free diet for years before my GI mentioned this (and it’s covered by insurance so why the heck wasn’t it mentioned when I was a teen?!). It doesn’t hurt at all. You essentially don’t brush your teeth and blow in a bag. Just a bit time consuming.

    Good luck, lots of hugs.

    • 1. How ironic is it that Insanity Wolf is keeping you sane? 😉

      2. My doctor’s tone is very hard to read, especially since me and my Dish are interpreting it veeery differently. Dishy feels that he doesn’t really care, and he isn’t doing much for us. And yes, the first time we heard that it DEF sounded like a “Yeah, I don’t really think this is really a problem.” But he said to schedule an appt for the end of the month and “We’ll see what happens.” He did say to call earlier if the symptoms returned (to be fair, when he dubbed me a mystery, the symptoms had stopped). I called in the day before yesterday to report that things were getting rocky again, and I got a call back yesterday saying “Come in asap.” which I was wooed by since getting an appt was hard, so he must have opened one for me or I was taking an ’emergency slot’ like you said. So I gave him another chance, and today he said “Well, you’re still a bit of a mystery and I need more info. I can see you as soon as tomorrow for an endoscopy, and we’ll schedule you an ultrasound as well. The faster I can get you back, the faster I’ll have answers.” I was pretty mollified by this response, and it seemed to me that sufficient concern was being given. Then Dish surprised me by standing up, blocking the door, and saying “What about the pain? We need to do something about this!” and I was like “….we are, aren’t we??” Quite bewildered that we weren’t on the same page here. So we have differing opinions on this doc’s ability to help. I do have my doubts I guess. I’m thinking we’ll do the tests, why not? And then if he calls me in again just to say “Well, everything looks healthy. Let’s wait a while and see what happens.” I’ll move on.

      3. YOU HAVE NO IDEA HOW MUCH I LOVE CHRISTOPHER WALKEN. He can make me smile under ABSOLUTELY ANY CIRCUMSTANCE. And that is one of his BEST LINES of ALL TIME. “Yer talking to me all wrong.” HA! I love him. Have you seen this? http://www.youtube.com/watch?v=YKd03gVN_7A (I used to think this was the FUNNIEST video ever but I admit, host-guy is pretty lame. But the cornucopia of awesome Chris Walken footage makes up for it!)

      4. I did a lactose intolerance test yesterday, but it wasn’t what you’re describing. My doc said to drink a quart of milk in 30 minutes (I was like WTF buuuut okay) and hang out for an hour, see what happens. So I did it, and felt pretty normal. Full, but not sick. So I’m in the clear! 🙂 I am intrigued by this other test though, it sounds a bit more legit.

      ❤ As usual, you made my day!

  4. True but sad, I have to say I laughed out so loud when reading this post… No matter where you are from, or the condition you suffer, you always get the same crap! :p

    I am also a “blondie little guinea pig”… Yep, that’s the way my brother calls me! Because whenever I go to the doctor he puts me on a new treatment… Anything to solve the “me mystery case” as well :p

    Also my sister in law is every now and then telling me about this or that natural magical remedy. Well, have to say some of them seem to have worked! Sometimes we are so desperate that we just try…

    Oh well, we better laugh at those things like we do otherwise we would get so stressed that we would collapse hospitals around the world, right?

    I love this post. Will send it to my dish see if he can help stop all this!

    Hope you get better and that there is no need for surgery…

    • Thanks! Glad I can make you smile. You’re right, we all just have to keep laughing. Glad I’m not the only one who has in-laws pushing natural remedies. I always feel soooo silly taking them! But I guess it’s worth the try!

      We’ll be finding out about surgery Monday. Fingers crossed!

  5. Pingback: Breaking Up is Hard to Do « Do I Look Sick?

  6. My favorite is “You just ned to get on a schedule”. I AM on a schedule, just not yours. Maybe I’m not a “functioning” member of society in exactly the same way you are, but I do what I can, when I can. And if you can’t understand that, or that’s not enough for you, then you are welcome to go elsewhere. I am well enough to talk to a person today, and that’s good enough for me. I’m just sorry that person had to be you.

    As far as medical mysteries go, I have been one several times. In each case the treatment they gave me worked, so I was fine with it, but the docs couldn’t figure out why, so they were all atwitter with flaily feelings of inadequacy. One time they had an inter-departmental meeting about me. I thought it was pretty awesome, actually. I guess I’m enough into the science of the whole thing that the term “medical mystery” gets me a bit excited. Granted, if they said it and just left it at the I’d have a hissy fit all over the place. If they say it and then keep on trying to figure out the mystery it kind of makes me giddy. Demented? Perhaps, but if you don’t laugh you’ll probably cry, right?

    I’ve just started with your blog but I like it so far and am looking forward to more.

    • Haha I’m glad you have an appreciation for being a medical mystery. I was never good at science, so it’s all very intimidating to me.

      Thanks for checking out the blog! I hope you enjoy it. 🙂

  7. Pingback: Invisible Illness Awareness Week Meme! « Do I Look Sick?

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