This year, I’ve had a lot of help from some wonderful people. I’ve also had a second, significant chunk of wonderful people who have said variations of: “I want to help, but I just don’t know what to do!” In my neck of the woods, the most common way for people to help is by bringing a meal so the family doesn’t have to worry about cooking during a stressful time. Which is great! Super, super nice for a lot of struggling people. Just not quite as helpful when you can’t eat what is brought.
That’s the tough part about caring for someone who has a chronic digestive disorder or illness – cooking for them can do substantial harm instead of the help you so kindly want to give.
So…what can you do instead?
I’ve outline some super-helpful, super-meaningful ways below:
Number One: Please don’t take my illness personally.
It’s the sweetest thing in the world when someone offers to bring a casserole or take me out to eat in an attempt to make my life easier. I so, so appreciate that gesture. And it really does stink to tell that person, “Thanks so much for your kindness, but I really have to be careful with what I eat.”
So, when you take it as a personal offense that I don’t want to eat your casserole or go out to eat at the best little restaurant (even though, really, I can’t), the situation gets a whole lot harder.
Trust me: I would love to eat whatever I want, and I whole-heartedly appreciate your thoughtfulness. As frustrating as it might be for you to offer something kind just to be told “no”, it’s exponentially more frustrating for me when I have to say “no”. See, I’m not turning down your kindness because I’m snobby; I’m doing it because I’ve already been extremely sick for almost a year (coincidentally caused by something I ate), and one teensy-weensy bit of the wrong thing can throw me into a days-to-weeks-long flareup and recovery process.
To give you an example, I had the smallest amount of gluten in an allergy medicine last week…didn’t know it for four days and kept getting sicker every time I took it. Once I finally figured out what was happening, the medicine had already built up in my system, and I was sick, y’all. In case you have ever wondered what a really bad flareup looks like for me, it’s stomach swelling to outrageous proportions, severe dizziness, intense pain, tingling in my legs and hind-parts, racing heart, low-grade fever, overwhelming nausea…and then, after a few hours of all that, imagine your everyday stomach-bug-esque sickness (except more painful) followed by several days of fatigue, nausea, and continued pain. I’m now five days out from taking that last pill and am still in the recovery process.
Getting it wrong can be detrimental to my health. I promise you, I’m not trying to be mean or difficult; I’m just trying to stay as healthy as I can.
But you know what does give me a great deal of comfort? Knowing that you care enough to offer. Please know that people like me sincerely, truly appreciate it when you try to make our lives easier…and we hope you understand that it’s really not you when we say we can’t. For us, food can be a very real, very significant problem.
Number Two: Please don’t make me feel weird.
I already feel weird enough, y’all. Trust me. Every business lunch, every family gathering, every party…for goodness sake, every time someone offers me a piece of candy or chewing gum!…I am reminded of the things I can’t do (or eat) anymore. I am lucky to be surrounded by many supportive and loving people, but that doesn’t stop the waitress from belittling me because she doesn’t know my situation and thinks I’m “a stick who just needs to eat with the rest of the group.” (You’d be surprised how many times things like that happen.) Honestly, those situations make me want to get up and wallop said waitress…but I remind myself that she doesn’t know, and then I keep on moving.
You, on the other hand, do know…so please let me bring my packed meal or just sit around the table to visit without making a big deal of it (and keep in mind that I’m genuinely trying to make it easier on you, while simultaneously keeping myself healthy, when I do these things).
Number Three: Please don’t ignore me.
Oh, man. The silence can be real sometimes. When I first got sick and was yet to be diagnosed, I had hundreds of people (literally) following my struggle on social media, calling, texting, visiting, encouraging. Within a few weeks after being diagnosed, that group started to dwindle…and, now that I’m eight months out, that group is down to about thirty. Of course that group consists of my family and closest friends, which isn’t surprising; but even some of the people I’m closest to have gone silent.
I know it’s hard to see someone you love struggling. (Keep in mind that I’ve had to watch Erin deal with other kinds of stomach struggles for the past five years!) I know you don’t want that person to be in pain, and you don’t know what to do to help. But by ignoring the situation, you make the person feel even more isolated. Please don’t ignore the ones you love just because you don’t know what to say; I promise you, we don’t really know what to say either, and just knowing that you’re there can make a world of difference.
Number Four: Please understand that my world is different now.
I am a different person than I was pre-illness. I can’t do a lot of the things I used to. These days, I may not feel comfortable going too far away from a bathroom. I may have an intense fear of eating out or eating foods from people I don’t know. I may not be able to make plans on a whim because every aspect of my existence has to be carefully planned and monitored for my health and safety. I’m not trying to make things difficult; if anything, I’m sometimes embarrassed and typically frustrated at the numerous limitations.
So why am I telling you all of this?
Because I…we…need you to understand. We need you to know that we’re trying our hardest to make it work, and we’re also trying to keep it from affecting you as much as possible. But sometimes that’s impossible.
One side note that I want to add here is about doing things like “gluten-free” or “dairy-free” dieting at will and talking about how great it is for you. I’m glad you feel better and that the chosen lifestyle is working out for you, I really am. Your choice, however, is vastly different from a medical necessity. You can cheat without significant repercussions. Just as an example, gluten exposure doesn’t mean the same thing to you as it does to someone who has a medical reason for avoiding it. It might make you feel bloated and groggy for a few hours, but it can positively wreak havoc and cause physical damage on someone with Celiac or gluten-intolerance. You can quit at any given moment; we cannot. For someone who has a medical diagnosis and needs to do these things, it’s not a matter of getting fit or feeling better…our whole lives have been disrupted without any say in the matter. And until you face something like that, you’ll truly never understand how difficult it is.
Which leads directly into my last point:
Number Five: Please remember that if my illness and medical requirements are hard on you, they are exponentially harder on me.
So you have to modify plans a little. Maybe you have to eat in instead of going to a restaurant, or maybe you get frustrated that I can’t go with you to do something.
If you think you are annoyed by that, you simply cannot imagine how I feel. That’s my every-waking-moment. Please have some patience, empathy, and understanding that, while this may be hard for you, you honestly have no clue how hard it is for me. On the flip side, you’ll never know how meaningful it is when you truly make an effort to understand.
The simplest thing you can do is show that you care.
Not through food…not through some elaborate gesture. Just by a quick text, kind word, sweet phone call, piece of snail mail, short visit. Whatever. Just let that person know you’re there for them when they need you. Because they do…more than you can imagine.
This life can be hard, friends. And you have the choice to make it easier on that person you love.