Me: I don’t eat gluten.
Them: I could never give up gluten.
Me: I can’t jog or do any exercise.
Them: I could never stop exercising.
I hear this response over and over. The “I could never….” response. And over and over I have the same response: you really don’t get it.
Let’s take gluten as an example. When I say I can’t eat gluten, even though the other person knows it’s for health reasons, they’ll say, “I could never give that up.” What do they mean? It’s not as if I gave up gluten on a whim. No one offered me a cure for Celiac and I said, “Thanks, but no thanks.” I wasn’t asked, would you like to give up gluten just for the hell of it?” No, this is necessary for me to live.
So when someone says, “I could never give them up,” what I hear is, “I would rather die.” Because that’s the other option. Give up gluten or die. No, death wouldn’t come immediately, but it would come eventually. And in the meantime there would be a lot of horrible nausea, pain, and other symptoms.
When someone says, “I could never do that” they probably mean that they’re impressed that I can do it. As if I have a choice. They probably mean it in a nice way. But it doesn’t feel that way. Because the other thing I hear is, “I love this thing so much, I can’t imagine living without it, but you can’t have it.” Again, I know they don’t mean it that way, but that’s how I hear it. They get it and I don’t.
Exercise is the same thing. When someone says, “I could never give up skiing/jogging/dancing/kickboxing/some-other-form-of-physical-exertion” what I hear is, “I would rather die” or “I love this thing so much that my life wouldn’t be complete without it, so your life must really be lacking.” I’m sure they don’t mean to convey that message, even though I do get the feeling they’re privately thinking it. Because what else could they mean? When I say, I can’t do that, and I really can’t, even though I want to, but my body won’t let me, then they know I have no choice. Responding that they could never give it up just shows me how important it is to them.
What if I was in a wheelchair? Some days I have been. More days I will be. So far, no one has said, “I can’t imagine not being able to walk.” But I’m pretty sure they will. Because to them, life can’t be complete without the ability to walk. Yet I’m also pretty sure that if I told them they had to choose between using a wheelchair and death, they’d choose the wheelchair.
I keep offering death as the alternative because as far as I can tell, there is no other. It’s not like I can find some other alternative through “trying harder” or some miracle cure that I’ve simply chosen to not take. This is my reality.
Every time we’d talk about my grandmother’s advancing age, she’d always say, “It sure beats the alternative!” Then she’d blow out the candles on her birthday cake. She said that every year until she passed away at the age of 94.
So from now on, when someone says, “I could never….” to something that I have no choice about, I’m going to say, “It sure beats the alternative!” and then give them a moment to figure out what I mean. I think that might shut them up.
Because even if they don’t mean it to, it hurts.
What has your experience been with “I could never….”? Do people say it to you? How does it make you feel? How do you respond? Please comment below.
Chronic Rants 
THANK YOU! Honestly I’ve been struggling with this a lot lately. With gluten it’s kind of old news to the people around me, I either bring my own food or work around it, but it still comes into conversation once in a while. Now that my health is failing more and I physically cannot do what most 28 year old’s can I’ve started having those tough conversations again. I think people are in part in denial of how rough my illnesses can be (I don’t ‘look’ sick) and a lack of understanding on how lifestyle, diet and activity can really effect someone’s well being. Before I had to give up bread, I probably would have reacted similar, sad to say.
Your grandmother was a wise woman. That really is the perfect response, it’s not too morbid and doesn’t lead into yet another hour long conversation about health complications that I had no plan on. I honestly feel a little better about the next onslaught of social gatherings.
That’s rough. Yeah, it can be hard to get people to understand how serious this stuff can be, especially when we “look” ok, more or less. And I *did* react the same way for a while – I told myself I could never give up gluten. But then I had to. Funny how quickly that perspective can change.
Yes, my grandmother was a very wise woman. She passed away years ago, but she still teaches me constantly 🙂
I hear “I could never live with chronic migraines”… but it’s not like I have a choice!
I usually get that comment from people who have experienced how bad they are. So on a certain level, they understand the pain. Which is why they say that. Because they know how much migraines suck the life out of you.
-Kelly
I guess it’s nice that they understand (to some extent) and respect what you’re going through.
Yep! I’ve gone gluten and dairy free on the advice of my doctor and my pain and fatigue has dramatically dropped. Bonus side affect of serious weight loss (and I needed it)….my mum almost certainly has the same condition as me and has been told she HAS to lose weight (her insides literally just erupted out through her stomach, as in open to the air) as it is putting pressure on her weak scar. But she won’t do it. She keeps saying she can’t. Yes you can. Just decide not to eat gluten. The option is literally that it is going to happen again and could easily lead to death. Won’t do it tho………
And I had to give up running. You know because my legs refused to work and I ended up in a wheelchair. Managed to get myself out for the most part (now just use it part time) and I walk as much as I can. But I can never go back to high impact exercise or even that which releases a load of adrenaline. So, no, won’t lead to death, but will lead to a much worse quality of life in the short, medium and long term. I had to unfriend all my triathlon friends on Facebook as it was too depressing to deal with.
It must be so hard to hear your mother saying she can’t do it, even as you are doing it. And I know what you mean about Facebook – it’s hard to see people doing the things I used to do but can’t anymore. Facebook is great for a lot of things, but that part is hard.
I hear that phrase so often.
I’ve been gluten and dairy free for over 3 years now and although it hasn’t made a difference to my pain and energy levels (my first major crash actually occurred after I changed my diet), it has stopped the eczema I’ve lived with my whole life and minimised my asthma attacks. My sister has issues with dairy (and possibly gluten) as well but always says she loves her food too much to give it up. I must admit I miss some things but the benefits outweigh that (I am trying to reintroduce reduced gluten levels – homemade long fermented sourdough).
I have had to give up most of my exercise and I get frustrated the number of people that tell me that if I just did more I’d be better. It doesn’t work that way! If I did more I’d dramatically decline and could end up 100 times worse off than I am now.
Good luck with the reintroduction, Megan! I hear you on the “if you did more” comments. As if that never occurred to me. As if I didn’t want to do more. *sigh*
Thanks! So far the sourdough seems to be agreeing with me so I’m sticking with it and I’m going to slowly reintroduce other gluten items to see how I go.
That’s great! Congratulations! How are the others going?
So far, reintroducing gluten has gone reasonably well. No rashes or tummy issues (apart from very slightly more bloating) and the only obvious side effect so far is a buzzing feeling for an hour or so after eating gluten.
That’s great Megan – congratulations! For me, the bloating was a sign of worse things to come, but I’m hoping that’s not the case for you. It’s been a few weeks since you left this comment, and I hope things have continued to go well for you!
So far, all is good. 🙂
Hooray!
People used to tell me often they could never go through all I do and still come out smiling…. And because I do, to give myself a break and stop being so tough on myself. I totally get that the ones who said it really mean it a d are trying to encourage me in the only way they know how.
The ones who didn’t realise how much effort just getting through each day took were shocked when I went into respite in residential care in a nursing home… And then we’re even more shocked when I chose to trial it as a longer term thing.
The reality is I got to the point where I couldn’t do it anymore either. Those who are.my close friends or family are relief Ed I’ve got the help I need… If the next surgery finishes me off ill ha e had a happy last few weeks, and if not I’ll have the support I need to recover from another massive surgery.
Yeah, we put on such brave faces that sometimes people don’t realize how tough it really is. I’m glad to hear you set yourself up for the support you need, Jacksdavie. Good luck with your surgery!
thank you! I am hoping to get back to posting regularly in the meantime 🙂