5 Things People With Chronic Illnesses Want Friends and Family to Know

This isn’t a bashing-on-anyone-post. Or me telling you how much worse I think people with chronic illnesses have it. I don’t. I mean, yeah it [being eternally sick] sucks, but the two things I’ve learned being sick for 3 years is:

  • Everyone has their “thing” that is the worst thing in the world to them.
  • Joy is a choice that you have to fight for.

Self pity is easy.

I wrote this for people who are curious. People who love other people who are sick. People who want to be helpful and just have no idea what to do or say. For the best friend, S.O., parents, mentor, or acquaintance. And before any of you ask me about it later, I’m not talking specifically about any of mine (because I word vomit all this on you daily). 😉

I know I’ve been there when someone I love is going through something I just don’t understand. I can’t speak to every illness ever. Like I said – as awful as it is – I’m pretty blessed to not have it worse than a lot of people do. But I’d like to think based on my own experiences, and my spoonie friends, that there are a couple things that we wish were unspoken rules and maybe you wish you knew. So, here they are.

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1. “How are you feeling?” is a weird question.

I’m not saying you need to stop asking it. Just think about this.

For the healthy person, it’s kind of the equivalent of someone walking up to you in bed when you have a 101 fever and saying… “hey man, how’re you feeling?”. You’re just sort of like… um… are you seeing okay? But that doesn’t happen because a healthy person takes 1 day or two to recover and jumps back to work even if they’re a little sniffly or under the weather.

The healthy person has a body that responds when you are trying to do what’s good for it. But the chronic illness sufferer (aka spoonie) has tried every doctor, specialist, supplement, pill, procedure, tea, diet, and weird practice under the sun to figure out their mystery illness. They’re in a constant state of “101 fever”. They don’t want it to stop them from living the lives they want to, so they get up and deal with the symptoms. Some days they look and feel totally fine (which is what misleads people), but for the most part they don’t or their bad days are total hell. The chronic illness sufferer never feels better (trust me – if we found a cure, you’d be the first to know).

So when the person with a chronic illness is asked “how are you feeling?” (almost with a subtle implication that the expected response is “great” or “better”), do we lie and say everything is great? Or be a total killjoy and unleash everything since we last saw you? It’s usually an “I’m doing okay.” Because what else are you supposed to say? We don’t really want to tell you we’re not doing any better and you don’t want to hear that. So, I have a solution of sorts. 🙂

Some questions that may be a little more inviting for the spoonie in your life might be:

  • What’s the latest thing that’s been going on with your health?
  • How did that elimination diet/procedure/etc. go? Did it make you feel any different?
  • Do you need anything from me? Let me know if you ever do. 
  • Have you found a new doctor that you like?
  • I saw your post! Tell me about that. 

These are questions that would at least make me feel a little bit less like a deer in headlights.

2. Don’t stop inviting us to things.

I know it really must suck to have a friend who you have a ton of fun together with half the time and then they end up bailing on you the other half (I’m not talking about people who are just flaky; you might want to rethink those friends). It’s confusing and I’d probably be hurt or wouldn’t understand them.

I can tell you from this side of things… we hate canceling on people. Because not only are we canceling on something we wanted to do, we get to sit in the bed/bathroom/wherever and think about how miserable we feel, instead of going out to do that fun thing we were going to do with you. It’s actually extra depressing because it’s not a one time thing… it’s all the time. I still get frustrated some days when my body is not having it (you think I’d be used to it by now).

We’re still people. We’re still your friends. We’re still fun. Give us the chance to do something with you when we’re having a good health day. And we’ll be like 100x more fun because we appreciate good days more when we have them.

Some ideas to still get in quality time with your spoonie friend on a bad health day:

  • Ask them if they want to play a game on the phone/watch a show on Netflix together if they’re in that much pain/discomfort that they want to be alone.
  • If they’re feeling a little under the weather, but are up to having people over, you could ask if they’d like to do something low-key like a movie/game night with just you two or people you’re close with. You could even bake some pre-approved snacks together. Brownie points for having them ready when they get there.
  • Go through a book/read together.
  • Go on a light walk together.
  • Have a low key tea party.

These are just some things that allow me to hang out with people even if I’m not feeling 100%.

3. Ask questions.

In the last couple of months, I was somewhere where I was around a couple of people I didn’t know particularly well and I felt completed isolated – like I was under a microscope. I think no one wanted to upset me or make me feel weird by asking about some of my weird health habits, but by tip-toeing around me, I actually felt awful.

I know it may be weird, but I love when people ask me (genuine) questions about my health/my illness. I’m not saying it needs to be the topic of every conversation, but in certain situations (like if I’m not eating and everyone else is, if I’m diffusing some essential oils, or I take a bunch of pills before every meal)… then just kindly ask why I am doing it. I am happy to tell you, to normalize the situation, and carry on to something fun.

4. Doing some research on our illness and/or remembering what we tell you is worth more than you’ll ever know. 

If you have developed a chronic illness or found a diagnosis a little later in life… you know the process is daunting. It likely didn’t happen during your first doctor visit. I was surprised at the friends that just didn’t understand and drifted away during this process and at the ones that stuck (well, not really that surprised to those ily guise).

Going through all of that can feel lonely. You’re the only one that knows your body as well as you do and to have to learn new recipes, routines, research, etc. and it is super overwhelming.

So let me just tell you, I actually got TEARY-EYED when someone I wasn’t necessarily close with told me they had done a little research on my condition. I don’t really know why. It just made me feel less alone. Like someone cared. My boyfriend helps me make food I can have on SCD. My sister (also a SIBO sufferer) encourages me and sends me recipes regularly. And my mom shares articles with me. It makes my heart really full and I would highly recommend surprising someone in your life by doing something like:

  • Listening to a podcast about their condition. Tell them you’re sorry they’re going through that and you’re praying for them. Ask questions.
  • If you know someone on a crazy diet, lookup what they can have and surprise them by making a meal/baking something for them. 100% guarantee you’ll make their day.
  • Read an article.
  • Join a support group to understand more.

5. Try to be as understanding as possible.

This probably should have been #1. Maybe this is just my problem, but it is a million times harder to cancel on someone, have to stick to a routine, or try to make accommodations for something and someone is difficult or frustrated. I am a people-pleaser by nature, so if I cancel on a friend and I can tell they’re upset… I get even more stressed out about it.

I know it sucks, but it sucks for us too. Would you leave the house if you had a stomach bug? A fever? Severe body aches/pain?

No, you wouldn’t.

Just try to imagine having any of those things. Really, like close your eyes and imagine it. It’s miserable, isn’t it? So just try to remember that, pray for this person in your life, and try your best to love them through it. They’re still figuring all of this out too and what their new normal looks like. Having the social support and understanding of a support system has actually been shown in studies to promote healing. So… don’t underestimate the power of your influence.

I hope this was helpful. Had been thinking about writing it for a while. Whether someone you love suffers from chronic migraines, Crohn’s, Hashimoto’s, SIBO, leaky gut, Lyme, Fibromyalgia… whatever. They love you. And hopefully this helps you to better love and serve them. 🙂

 

2 thoughts on “5 Things People With Chronic Illnesses Want Friends and Family to Know

  1. Hey lady… I just stumbled across your blog. Currently battling SIBO myself and this post hit home…
    “How are you?” …I have come to dread getting that question upon arrival to work. Some days I can legit say I’m good, but the other times… I HATE lying. Like you said, nobody wants to hear the truth if the truth is you don’t feel well. I’ve been working through a lot of these same thoughts lately. This was such an insightful post 🙂

    Like

    • I’m so glad you enjoyed it! And I feel you on that, girl. It’s tough, but it really makes you appreciate the good days so much 🙂

      Wishing you the best on your SIBO journey!!

      Like

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