25 Things Not to Say to a Spoonie + Ecards!

5:00:00 PM


As I've mentioned before, I am 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! 

There are many topics or comments that can be hard for spoonies to hear. I've created a list of 25 things not to say to a spoonie. Some of these comments may not bother others, but you should really think about each one individually before bringing them up to someone you know that struggles with an Illness. 

A great way to decide what to say is to 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?

If you're still not sure what you can say, just make sure you stay clear of the following. 

1. "You don't look sick."
Being sick doesn't mean we have to look a certain way. I have over a handful of chronic illness and you wouldn't know just by looking at me. I hate hearing this because it makes me feel like I have to look horrible for people to take me seriously. The one thing I can control in my life is my clothing and make up. I will do whatever it takes to look semi-presentable before going out in public. It may have taken me 2 hours to get ready, but if it makes me feel a little better by looking this way, don't make me feel guilty for it. 


Photo Credit: beatingcowdens

2. "You're too young to be sick."
This one gets my blood boiling! I had a doctor tell me that other medical professionals don't take me seriously because of my age. He said, and I quote "You're 20, so no one wants to diagnose you with more than one illness." I'm sorry, but I don't really care what you want to do. If I was previously diagnosed with hypothyroidism, and I have cancer too, you better tell me that! We understand that we might be too young or too old for the illnesses we have, but we have them anyways. We honestly can't control what our bodies decide to do. It's like telling a short person that they are short. I can guarantee they already know; I can say this because I hear this a lot. 

3. "Everyone gets tired" or "Did you get enough sleep?"
I know this one doesn't just bother me. Dealing with a chronic illness can be very tiring, in a way that healthy people don't understand. Our bodies are fighting against themselves daily, and on top of that we probably didn't get enough sleep either. It's really hard to sleep when your mind is going a mile a minute, or your body aches all over. I only recently learned that I have a sleep problem, that went undiagnosed for 20 years. 

Photo Credit: Crazy Purple Mama

4. "You're just having a bad day."
I appreciate that you're trying to make us feel better, thinking that there's a better day ahead, but sometimes there isn't. Yes, we do have good and bad days, but they don't alternate in an orderly fashion. I might sit on the couch all day and wake up the next day feeling unbearably sore for no reason. On the other hand, I might push myself a little bit overboard and feel fine the next day or I won't be able to get up long enough to shower. We're not telling you how we feel because we're having a bad day. We're telling you so you can better understand what we're going through. 

Photo Credit: Someecards

5. "You need to eat better."
Unless you are a doctor and know all of my diseases, activities, and medications, you better not say this to me. I know that I eat like a picky child and I have a really big sweet tooth, but my doctors have even told me that my medications and my body won't allow me to lose weight. So thank you for the advice, but I'm going to continue eating the way I feel is right for my body. Many other spoonies eat as healthy as can be, but still can't seem to loose the weight or fix their illnesses. Some things that are for one body, may not be for another. Each of us are different and as Amy Poehler once said, "good for you, not for me."

6. "You need to exercise more."
This one piggy backs off of the last one. I used to be a varsity weight lifter and I would take 14 mile bike rides just for fun, but I just can't do that anymore. I've tried my best to keep exercising since my diagnosis, but it's just not possible. I get lightheaded standing up and I can barely make it through a shower without fainting. I would love to exercise more, but some of us just can't do it. Please just except that, it can be an upsetting reminder when you say this to some of us. 

Photo Credit: Pinterest

7. "I'm sorry."
I know that you feel uncomfortable and you're unsure of what to say, but when you apologize to us, it makes us really uncomfortable too. We know you're just trying to say the right thing, but we know you didn't give us our illness and we don't blame you either. We're not asking you to apologize for something you have no power over and more than that, we don't want you to feel bad for us. If we're opening up to you, it's because you're important to us and we just want you to understand us a little better. You don't have to apologize to us, just being there, supporting us, and listening to us is more than enough. 

8. "Don't give up."
This one gets me every time. I'm not giving up, but sometimes fighting a lost cause isn't the answer either. We can't help it that our bodies are giving up on us, but we're not going to fight against it and quicken the process either. We try our hardest every single day just to survive. You may not see it on the outside, but it doesn't mean that it's not true. 

Photo Credit: Doc Jokes
9. "Think positive."
I'm especially horrible at trying to think positive, I think that's why my husband and I are such a good match. I'm a realistic person and I make my decisions based on logic and research. If my doctor tells me that I could either have x, y, and/or z; I'm going to research those and realistically deal with the fact that I might have them. I'm not just going to ignore it until my doctor tells me exactly what I have. I will, of course, hope and pray that it's nothing or at least the best worst case scenario. We do try to think positive, but it's hard when so many aspects of our lives can be negative. 

10. "I know how you feel"
Saying this is a big no-no. Under no circumstances will a healthy individual (mentally or physically) ever understand how we feel. In fact, some spoonies can't even say this to other spoonies!  I doubt any two people have the same exact life or group of illnesses. Yes, there are things we can connect on and we can share stories of how they effected us, but no one can really know how someone else feels. 

Photo Credit: Brittany Vail Blog

11. "It must be nice not having to go to work." or "It must be nice not having to go to school."
I've gotten this one before and it honestly makes me want to cry. Leaving school and quitting my job wasn't necessarily my decision. I couldn't make it through my classes or my shifts and I began to realize I couldn't do it anymore. Every single day, I struggle with the realization that I will never be able to do what I set out to do in life. When you have a chronic illness, it can effect every aspect of your life and you rarely get a say in the matter. Think about the fact that the person you want to say this too, doesn't have it easy. We tend to have way too much time on our hands, and not the way you wish you did. We end up spending this time trying not to think about the things we can't do or overthinking until we drive ourselves insane. 

Photo Credit: Chronically 20 Something

12. "I hope you feel better soon."
We understand you're trying your hardest to say the right thing, but this just isn't it. Our symptoms may go away for a while or we might go into remission, but some of these illnesses are life long. We will forever struggle with our symptoms and we might not get better. You have to remember that it's not going to pass like the flu or the common cold. I struggle with this myself sometimes. I've gotten a little better at it and I try to say things like "I hope your symptoms ease up for you," or "I hope your doctors find a better treatment plan for you." 

Photo Credit: Someecards

13. "But you were fine yesterday."
As I mentioned before, we have both good and bad days. I don't think I've ever had two days that felt the same for me, physically or emotionally. I try to keep all of my plans, but it can be really hard. We can't guarantee how we'll feel on a certain day or time. I know for myself, I do better earlier on in the day so I always try to make my plans for before noon. I also know that the couple of days after my plans can be really hard and I need time to recover. So I try to be easy on myself the couple of days before my plans, that way my recovery is a little easier. If you want to make plans with us, but you know we tend to cancel, see what times or day's work better for us. We'll feel better that you let us be a part of the decision making process, and we're less likely to cancel. 

14. "It could be worse."
I will almost immediately unfriend someone if they say this to me. I know that it could be worse. I'm grateful that I have all of my limbs, but that doesn't mean that I have it easier than the people you think have it worse. We are each going through our own struggle and for some of us it seems like it will never get better. For some of us, it even seems like it is getting worse. When you have one chronic illness, you are more susceptible to getting another. I try to stay away from this phrase because it might get worse for them. We hope and pray it doesn't, but that's all we can do.  

Photo Credit: Frou Frugal

15. "God only gives us what we can handle."
I am a firm child of God and believer of Christ, but I don't believe this statement for one second. Not only is it not in the bible, but I can't think of one person that truly believes they can handle everything God throws their way. I think that God gives us more than we can handle so that we turn to him and others for support and guidance. I don't think he gave me these illnesses to hurt me, but I do think they play a part in my purpose here on Earth. Maybe it's to tell others about my story through this blog or something else, but he definitely gives me more than I can handle. Saying this is less than encouraging; it's almost like you're saying that if you were in our position, you would handle it better because God doesn't give you anything that you can't handle. You might not see it this way, but some of us do. 

16. "You take too many medications."
We are well aware that we are taking too many medications, we don't need the reminder. I take five different prescriptions a day and I'm afraid that I look like a druggie when I pack my purse for a day trip, but it's not up to me. At this point in time, I'm going to do almost everything the doctors tell me to do. If they say that these prescriptions will make me feel a little better and can possibly prevent my illnesses from spreading then I'm going to take them. Medications, much like vaccinations, may not be your cup of tea, but please don't try to push your beliefs on us. We're doing what we think is right for us and our body. Please respect that. 


Photo Credit: Someecards

17. "What are you going to do when you have kids?" 
This is a hard one, for many reasons. Ever since I was little I wanted three kids. I've had their names picked out since the 8th grade: Lily Alana, Summer Elizabeth, and Aiden Michael. I know it might sound ridiculous, but it's true. All of that changed when I got my first diagnosis. I was nowhere near ready to have a child, but my doctors made it very clear that if I ever want to, or think that I am, I need to tell them right away. I learned that many women with my illnesses have miscarriages and without following the right directions it could lead to death of the baby or the mother. I am still not ready to become a mother, but as I add more diagnoses to my medical chart I'm beginning to realize that I may never become one. Not because I don't want children, but because I don't want to put myself through that emotionally or physically. I have to be realistic that as a military wife, I might not be able to take care of these children on my own, when I can't always take care of myself. Not all spoonies feel this way, put please keep in mind that this may be a very hard topic for some to talk about. 

18. "I knew someone with the same thing and they didn't have all these problems."
I've said this before and I'll say it again, NO TWO PEOPLE OR ILLNESSES ARE THE SAME. Your best friend's, mom's, cousin's, husband may have the same illness that I do, but we won't always have the same symptoms. The treatment plan that worked for him, may not work for me. Not only that, but there are also so many other factors in each of our lives that effect us both differently. Please don't compare us. 

Photo Credit: Someecards

19. "There's always something wrong with you."
We are well aware that something is always wrong with us, we have chronic illnesses! I hear this one a lot, but I can't help what's going on with my body. I just try to be less open around the person that says this to me. I've learned that the people that say this phrase, usually tend to be the one's that ask you how you are, but don't really want to know. They're the one's that you lie to and say "I'm fine," or you just say "I've been better" and you leave it at that. You might think you said it in a joking tone, but spoonies don't tend to see it as a joke. We tend to see it as you not wanting to talk about this anymore and you'd rather stick to small talk about sports or the weather. 

20. "You need to stop stressing." or "You worry too much."
I probably hear this once a day and it gets really annoying. I have an anxiety disorder and it's something I can't control. Even without an anxiety disorder, spoonies tend to worry. I know for me, I'm really bad in doctors offices. When I was younger it was because my mom would tell me I wasn't getting shots, then once I get there they would pull out the needles. Now its completely different. For the last four years, I've gotten a new diagnosis almost every tine I've walked into the exam room. I'm constantly afraid that I've got something new or worse and it's just stressful. I try to be calm, but like many others, this is something we can't control. 

Photo Credit: Rebecca Bratt

21. "It can't be that bad."
If we're telling you it's bad, please just take our word for it. Otherwise, it's going to turn into a conversation about us trying to make you understand how bad it really is. We end up getting upset and you learn all the scary things that we try to hide from you. Many of us don't over exaggerate because we know exactly how bad it really can be. Please just believe us when we tell you its hard, it helps us know that you trust us and believe us. Therefore, we can continue confiding in you when we need to. 

22. "You're stronger than you think."
This one kind of piggy backs off of number 15 and number 21. We know how strong we are, and when we tell you we are struggling or having a hard time, we mean it. We're not telling you we can't do it anymore because we want attention or a pep talk, we're telling you because we're really at the end of the line. We feel like giving up and quitting. When you tell us to try harder or think positively, we begin to think you were the wrong person to come to during our time of need. We like to make everyone think that our life is easy, we try to hide our symptoms and pretend that we can do it on our own, but we can't. Please don't push us away when we realize that and come to you. 

Photo Credit: Someecards

23. "We were going to ask you but thought you'd say no."
I honestly hate this one, it's the one that's ended the majority of my friendships when I got sick. I can't do everything people my age are doing and that leads to a lot of declined invitations or canceled plans, but it doesn't mean I don't want to spend time with you. It doesn't feel good to anyone when they find out that their group of friends went out without them. Do you know how that feels?! I would rather you ask me and I have the chance to make the decision. I might be feeling really good that day and say yes, or I might say no and genuinely want you to go out and have fun. We don't want to make you feel bad going out without us, but we also don't want to you to stop putting in the effort to spend time with us either. Sometimes all we need is a text saying "get in your pj's, I'm coming over with movies and ice cream." Obviously, that's not all of our ideal plans, but it'd definitely work for me! 

Photo Credit: Someecards

24. "If I was in your situation, I'd try harder."
I wrote a little about this one under "God only gives us what we can handle." You will never know what it feels like to be in our shoes, and we hope that you never will. Each of our situations is different, some worse than others, but we would never say this to each other. Therefore, we don't want to hear it from you either. We go through difficult stuff every single day and we torture ourselves thinking about our life before our diagnosis. We're jealous that even the thinks that you think are hard, might be easy to us. We're jealous that you get to follow your dreams and don't spend most of your free time at doctors appointments. Under no circumstances, should you ever say this to a spoonie. We are trying as hard as we possibly can. 

25. "Have you tried..."
Piggy backing off of number 18, what works for some might not work for others. We know you're just trying to help, but we've probably tried everything you're going to say: exercise, dieting, yoga, therapy, essential oils, etc. We are doing our best to deal with this, just like you're doing your best to help us deal with it. If you were to say, "I read this awesome article about x and how it helps with y," we might be interested in reading it! Just don't try and offer us things thinking we've never heard of them. We really are trying to do everything we can to help our bodies. 

Photo Credit: Indulgy

As I mentioned before, even I struggle with some of these things. 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. :)


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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2 comments

  1. Ivy, I could not agree more with this post. I too am a "spoonie" although, until today had never heard the term or read the article about it. I could not help but cheer in solidarity as I read through this post. As someone who has been living with an Auto Immune Disorder for years I have had many highs and some extreme lows. I too, hate when people recommend that I eat healthier and exercise as though an increase of Kale and a boot camp session will cure my chronic illness!

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  2. I'm glad you were able to connect to this one! My spoonie articles are near and dear to my heart. As I struggle with multiple chronic illnesses, the spoonie tribe has really been a wonderful form of support. I remember the first time I watched the video, I couldn't help but cry because somebody else knew what I was going through. My favorite spoonie blogger has to be Chronically Courtney, I think you'd enjoy her blog very much! --> www.chronicallycourtney.com

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