I love the helpers. Those people who see a need and want more than anything to jump in and help. You’re the best kind of people… But how do you help someone who’s chronically ill? Where do you even begin?
If you have a heart to help but aren’t sure where to start, here are some ideas to point you on the right path. These are my suggestions, but they’re things I’ve heard echoed by others on this road with me. It’s not an exhaustive list by any means, but hopefully it will give you some food for thought and a place to start.
1. Be willing to come to me.
When I’m in a bad stretch, it takes a monumental effort to get out of the house. And if I’ve had to do anything else that day, like work or attend a school function, I’m probably depleted. When we have plans to get together, be willing to come to me. Understand that my house probably won’t be picked up and I may not look my best, but you’ll have helped me save my energy for the thing that matters more: spending time with you. When we get together, be mindful of the time. I don’t want to rush you, but in all honesty after an hour (or two at most!), I’m probably exhausted. Be willing to cut the visit short so I don’t have to feel awkward about asking you to leave, or push harder than I should. Shorter visits might mean I can see you more often.
2. Offer to meet me in alternative ways.
Maybe I’m just not up for an in-person visit. I know that might seem strange, but being face to face with someone in person requires a whole lot of energy sometimes. So be willing to meet me in alternative ways: by Zoom or Skype or FaceTime, for example, or just talking on the phone. I know it’s not the same, but virtual visits are sometimes easier, and I can talk to you from my bed if needed. Let’s keep it short, too. An hour is probably as much as I can handle some days. I want to see you, so if you’re willing to meet in non-traditional ways, I’d love to hang out.
3. Be understanding of cancelled plans.
Please understand that cancelling my plans with you doesn’t mean you don’t matter to me, or that I don’t care about our relationship. Maybe I was active yesterday, and I’m paying for it today. Maybe I woke up to a bad day and I’m just barely functioning today. Maybe I have something coming up that I can’t get out of, and being with you will use the energy I need for that. In any case, please don’t take it personally or think I’m being flippant. If we can, let’s make alternate plans (see above). If not, please know that I would love to see you another time, on a better day.
4. Offer to pick up groceries or run errands for me.
There are few things more exhausting to me than going to the store. When I’m in a bad stretch, I just can’t do it. So if you’re willing, offer to run some errands for me. The pandemic has been difficult, but it’s been good for me in one sense: many stores now offer drive-up or delivery of groceries. Still, maybe this isn’t an option for me, or maybe I can’t even get to the store to pick up the things I’ve ordered. There also might be other things I need that aren’t available for pick-up: items from the hardware store, specialty groceries, prescriptions, etc. If you would be willing to pick up those items for me, it will save me a lot of exhausting running around.
5. Offer to bring me a meal.
Sometimes the thought of making meals for myself or my family makes me want to curl up in a little ball. It takes so much energy some days to cook even simple meals. Offering to bring me a meal is a huge help. It can be something you’ve cooked or something you’ve picked up–either way, it’s a meal I don’t have to make! It can even be helpful to drop off some freezer meals that I can have on hand for future bad days. If I have food restrictions or allergies, offer to pick up food from a local restaurant that’s safe for me, or have it delivered to my house. Gift cards are great for this, too, although sometimes getting out of the house to spend them can be a challenge.
6. Offer to help me clean or make home repairs.
When I’m in a bad flare-up, things like housecleaning and home repairs go to the very back burner. Even if I live with a spouse or significant other, chances are much of their free time is devoted to caring for me and taking care of the things I can’t do. Offering to help me clean is humbling, but very helpful. Make it simple, and don’t judge me for the messes. Or, if finances allow, hire someone to deep clean my house for me (once, or routinely). Offer to help with those home repair projects that I just can’t seem to get done: that leaky faucet, the door that isn’t closing properly, or the wall that needs to be patched. Odds are those things are bothering me as I sit on the couch or in bed, but I just can’t do them for myself right now.
7. Help me do something that I love.
Maybe there’s something that I really enjoy, like gardening or walking in the park. I would love to do it in some capacity, but on my own it’s too overwhelming or exhausting. If you work with me, maybe we can do it together. Work alongside me to get my gardens ready to plant this spring. Help me with a craft project I just can’t finish on my own. Walk with me or push me in the wheelchair so I can enjoy a stroll in the park. It will be life-giving to me to do something that I enjoy!
8. Offer to take my kids for a while.
I love them, and I love my time with them, but odds are they’ve been cooped up in this house with me and they’re as sick of my being sick as I am. Have them over for a playdate, offer to hang out with them in the backyard, take them to the zoo… They need a break from chronic illness, and right now I can’t give it to them.
Likewise, invite my spouse to go out for coffee or drinks, or to hang out. He (or she) has probably been spending a lot of time caring for me and tending the home fires, and could use a night to get away and take a break.
9. Offer to pick up books, craft supplies, and things to help me pass the time.
I spend a lot of time at home resting. Sometimes I need sleep, but much of my time is spent in a sort of limbo. I would love to get out and pick up new books to read, or craft supplies, or crossword puzzles, but I just can’t get out. Offer to bring me some things that can help me pass the time. You don’t have to buy them–I’m happy with borrowed items! I would just love a way to fill my time besides a screen.
10. Send me notes or care packages.
This is the long haul. Picture your worst day sick day, and then imagine that the symptoms last for weeks, months, or years. That’s chronic illness. It’s easy to think about a get well card for acute illness, but sometimes we forget about the challenge of living with chronic sickness. I can cope with the day to day for the most part, but sometimes I get discouraged. A little note telling me you’re thinking about me, or a small care package with inexpensive thoughtful gifts lets me know you understand, and brightens my day. Some days, it’s the encouragement I need to keep going.
11. Help me find the humor.
Follow my lead and don’t laugh at me, but help me see the funny side in embarrassing situations or my limitations. Help me laugh at myself and my circumstances, because there’s nothing better for coping. Laughing with me lightens some of the burden and helps me feel connected to you. And it probably makes you feel less awkward around me, too.
12. Be willing to listen.
Be willing to listen while I talk, and take it seriously when I grieve the things I’ve lost. I’ve had to give up a lot of what makes me me, and much of what I enjoy. Let me be real for a minute and don’t try to fix me. I know it’s uncomfortable, but just sit with me while I process and grieve. I promise I won’t always be this down.
13. Help me to dream.
Sure, I can’t take that trip to Egypt I’ve been dreaming about for years. But help me dream about the things that I CAN do, and help me find ways to make my dream accessible. Maybe I can’t go to Egypt in person, but let’s take a virtual tour, order Middle Eastern food, or visit a nearby accessible museum instead. I live in Plan B, but there are still ways to do the things I dream about doing.
14. Help me find accommodations.
If I work with you, help me find ways in which I can still do my job, like sitting, or not lifting things. If I live with you, help me find solutions so I can still be a part of family life. Understand that I might need you to carry some of the load. I feel awful about it, and if I had any choice I wouldn’t be asking. But this is my reality for now.
15. Don’t cut me out of your life.
Don’t think that all we can talk about is my health. Sure, I hope you’ll acknowledge it–after all, it’s the elephant in the room and the thing that affects my whole life. But it’s not all I am. And I want to know what’s happening in your life, too. That’s the thing with relationships: they have to go both ways. Don’t hesitate to share what’s going on in your life and to talk to me about other things. Trust me, I need a break from this too.
16. Believe me.
Chronic illness and chronic pain are often what you might consider “invisible illnesses.” From the outside, it can be difficult to see the symptoms that are affecting daily life. I may not look sick to you, especially if you are only seeing me for short periods of time or catching me on a good day.
To make matters worse, in the pursuit of a diagnosis most of us have undergone countless tests and specialist appointments, only to be told that results are normal, or to have providers throw their hands in the air and call us a “medical mystery” before passing me on to the next provider.
Lurking in the back of my mind are fears about how you perceive me. Do you think I’m being melodramatic? Do you think I just can’t cope? Do you think I’m making all of this up? I once read where someone said, “The most empowering thing you can say to someone with chronic illness is, ‘I believe you.’” I can tell you from experience that there is nothing you can say or do that will make me feel more supported and understood than those three words. And that is what I need more than anything.