15 More Things Not to Say to a Spoonie + Ecards!
6:00:00 PM
As many of you guys know, I'm a Spoonie. If you don't know what that is, you can read more about it in my post, "What is a Spoonie?"
Living with a diagnosis can be very difficult, especially if you have more than one. Spoonies rely on their friends and family for support and understanding during these hard times.
We understand that it might not be easy for you to always show your support, and it can be hard knowing what you can say to help us. But more importantly, you need to know what not to say too!
Earlier this year, I created a couple posts that I thought would help individuals that may interact with chronic illness warriors: 25 Things Not to Say to a Spoonie and 25 Helpful Things to Say to a Spoonie. And after recent events, I thought it was important to add a few new points! 15 to be exact!
1. "Laughter is the best medicine."
This phrase just irks me so much! There is no real life medical situation that I can think of where this would be true. Maybe if a little kid tripped, skid his knee on the concrete, and dropped his ice cream, but let's be real for a second. You wouldn't tell someone with cancer or diabetes that laughter is the best medicine, so why would you say that to someone with a different chronic illness?
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| Photo Credit: Someecards |
2. "You're canceling again?"
When someone says this one to me, I immediately want to break down and cry. More often than not, if I cancel plans, it's because I REALLY need to cancel them. It might be because I've been struggling with a migraine that I thought would pass in time, I'm going through a flare, or maybe it's because I can't physically walk or move in any way. Whatever the reason is, I already feel horrible about it. 99% of the time, I was actually looking forward to the plans that I made. And unless they were last minute plans, I can guarantee that I did everything in my power to try and feel well enough to follow through with those plans. So when someone gets upset with me about needing to cancel, it's like adding fuel to a fire or kicking me when I'm already down.
3. "How are you tired? You didn't do anything?"
I wish I could say that I haven't heard this one, but I definitely have. A lot of people think that staying home all the time is all fun and games, but they are sadly mistaken. For one, many spoonies often try and work from home. So, many of them are busy the entire time they're home and that can be enough work on it's own. Not only that, but people don't realize just how much energy everything takes for a spoonie. So even if all I accomplished for the day was just brushing my teeth and making myself lunch, I still might feel just as exhausted as someone that ran a 5k during that same amount of time.
4. "I wish I got to take naps."
Napping isn't all that it's cracked up to be! Plus, there's one big difference between getting to take naps and needing to take naps. As a spoonie, there are many times were I have work to do, but a pounding migraine, faint head, and shakey hands keep me from doing it. So, when I can't fix it with sugar, I often have to take a nap, whether or not I want to. What many people don't understand is, that taking a nap then subtracts even more time from the time that I should be working. So although taking a nap might make me feel better, it often stresses me out even more.
5. "You're being a hypochondriac."
I can't stand hearing this! Being concerned about one's health does not make someone a hypochondriac. If I question whether or not I have another diagnosis, it's because I tracked my symptoms, researched the disease, and seriously think that I may have found the cause for my problems. Similarly, being concerned about germs doesn't make me a germaphobe either. When you have one or more chronic illnesses, especially autoimmune diseases, it's important to keep track of everything and do our best to stay as healthy as we possibly can!
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| Photo Credit: Someecards |
6. "My [insert random body part here] is killing me too."
I'm sorry, but under no circumstances, do I want to hear that you are also in pain. It just makes it sound like you are comparing your pain to mine and although you may be in pain, you can't possibly understand what I might be going through. I know that some people say this to sympathize with us, but it just doesn't come across that way. I don't think I've ever felt better about my pain or my situation, just because someone else was also in pain.
7. "Maybe you'd feel better if you lost some weight."
I think this is one of the most upsetting things to hear sometimes. What people don't realize is that many spoonies have no control over their weight. For me, I've gained close 75 pounds since my first diagnoses and I can't lose it. Of course, I would like to, but that's just not possible right now. Since my illnesses have a major effect on my body, I am unable to exercise and I can't diet because I constantly need sugar. Plus, I've tried three weight loss drugs and none of them did the trick. I'll lose weight here and there but then I end up plateauing again, only to gain it back later. So it's important to remember that some of us may be sensitive about certain issues pertaining to our illnesses and our bodies.
8. "You should have chosen a different treatment method."
UGH! This one! I'm sorry, but if you're not a doctor, please don't give me medical advice. I am doing everything that I possibly can to get myself healthy again, but when you have 15+ chronic illnesses, many of which are incurable, it's a really hard task to accomplish! I understand that statements like these might be coming from a good place, but that's not how it feels. Instead, it feels as if you don't think that we're trying our best and looking into every option that we have available, but we are!
9. "Those spots are for people that actually need them."
Honestly, this one gives me so much anxiety and sadness that I don't even know what to say, but I'm going to try anyways... Under NO circumstances is it ok to judge someone using a disabled parking placard. I don't care if they're old, young, skinny, fat, purple, or green. You have no idea what they're going through and therefore, have no idea why they might need that parking spot. I've been told by nurses that if they hadn't seen my medical chart, they'd think there was nothing wrong with me, but obviously that's not the case! Without knowing my illnesses, you would have no idea that I sometimes use a wheelchair, or that I often have to take breaks every few steps and brace myself with a wall. No matter what the case may be, it's not up for judgement. If someone has the appropriate identification and uses the designated parking spots correctly, then let them.
10. "You need to get out more."
Here's another piece of unwarranted advice that I often get! Just like laughter isn't the best medicine, going out more doesn't help either. Anytime that I have to go out of the house, it takes A LOT of preparation. I'm not just talking about getting ready either. If I know that I have an event coming up, I will try and use the least amount of energy possible for the days prior to that event. That might mean sitting on the couch for three days straight, not cleaning up around the house, or just not doing anything. And even then, our bodies are unpredictable. I might just flare up out of nowhere and have to cancel whatever plans I had. So, please don't suggest that we add additional stress and strain to our bodies than necessary. Most likely, we want to go out, we just can't.
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| Photo Credit: Someecards |
11. "At least it's not ..."
Just stop right there. I've gotten this one before, and it never turns out the way that the speaker thinks it will. For one, comparing illnesses isn't a good thing. There are so many illnesses out there and many of them haven't been researched enough to know which is worse. Plus, every person experiences every illness differently, so either way, you really can't compare the two. Not only that, but what if it turned out that the spoonie your talking to did have the illness you used to fill in the blank? I've had that happen to me on more than one occasion. There was the one time that I got, "well, at least it's not lupus or anything serious right?" To which I had to reply, that I did have lupus. Another time, I heard, "at least you don't have cancer." And while I haven't received this diagnosis, I do currently have nodules on my lungs that could be cancerous. They're still too small to test right now, but it's still something I'm worried about and don't want to be reminded of. So, even if you think saying something along these lines might cheer someone up, please reconsider. You never know what someone is going through or how your words might affect them.
12. "But you're going to be ok, right?"
I hate this question. It's hard enough trying to maintain our appointments, take our medications, and deal with the thought of being chronically ill; so, when someone asks us this, it's just another hard reminder on top of everything else. Realistically, spoonies have to take life one day at a time. Our bodies and our illnesses are unpredictable and it's a rough journey to navigate. I don't like the thought of having to think too far ahead because I'm not sure what condition I'll be in at that time. So when someone asks me if I'm going to be ok, I never know what to say. For me, I feel obligated to tell people yes, that I'll be fine and that they have nothing to worry about. Unfortunately though, I'd be lying. Right now, I don't know if I will be fine. I'm 21 years old with 15+ chronic illnesses, I have trouble doing simple tasks, and I have very few living relatives left. Realistically, I'm not going to be ok. And some days I can forget about all the facts and statistics and just live the life that I now know as normal, but when someone asks me a question like this, it's like hearing a new diagnosis all over again.
13. "Wait till your my age."
Just like I don't want to hear "you're too young for this," I don't want to hear "wait till your my age" either. Illnesses don't care how old you are, they just pick a target and go for it. So, comparisons like these don't mean a thing. Not only that, but comments like these can also be very upsetting to others as well. Some spoonies have been diagnosed with terminal illnesses and they might not want the reminder that they won't get to be your age. While others, have no idea what's going on with their health and don't like thinking more than three meals ahead. I know that many people think that words like these can be helpful, but in many cases they're not. Every person, at every age, experiences everything differently. There will never be two identical cases, so there is no room for comparison.
14. "This, too, shall pass."
Will it though? I mean these illnesses are chronic and many are untreatable. So, I'm not sure which part of it is supposed to pass. Is it the never-ending list of symptoms? Or the chronic pain? Is it the constant need for care and support? What part of our chronic illness is supposed to pass? I understand that some people think these words of encouragement are helping us in some way, but they usually don't. Personally, I just get frustrated by these words. I would be overjoyed if it were possible to move past this stage of my life, but I just don't see how that's possible. These diagnoses are forever and that's something I'm going to have to live with.
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| Photo Credit: Someecards |
15. "It's all in your head."
As I mentioned in my previous posts, even I struggle to find the right words sometimes. I only learned what not to say by being thrown into this hectic world of illnesses and doctor's appointments. I promise, I didn't write this post to make you feel bad. I wrote it to help you better understand us and make it easier for you to say the right things around the spoonie in your life. :)
And if you're still looking for a little bit of guidance, just THINK before you speak. The THINK method is a great one for anytime you're ready to talk, whether its in person or online. Ask yourself these questions before speaking:
And if you're still looking for a little bit of guidance, just THINK before you speak. The THINK method is a great one for anytime you're ready to talk, whether its in person or online. Ask yourself these questions before speaking:
T: Is it true?
H: Is it helpful?
I: Is it inspiring?
N: Is it necessary?
K: Is it kind?
Spoonies: are there any sayings or questions you'd like to add to my list?
Everyone else: do any of these sayings or questions bother you, even if you're not a spoonie? Are there any that you would like to add?
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