Supporting those with long-term illness

Helpful tips for the healthy who want to help their friends and family

A long-term illness like Lyme disease is made that much more difficult by the way it affects the healthy people around you. Most people are never taught how to deal with the seriously ill, and for some that results in a general discomfort being around the sick. Then there are others who want to help but don’t know how and are afraid to ask for fear of offending their loved one. Still others only want to help if they can do it the way they want to, rather than in a way that the sick really need.

This article is for all of those people who are supporting those with long-term illness. We want your help and we really need it, but sometimes we can’t express it.

It’s not about you

The first thing you need to understand is that nothing we say or do is about you. One of the things my friends struggle with is not seeing me. Some think I’m ignoring them, others think I forgot them. The truth is, I think about them all the time but I don’t have enough energy to engage with them.

Our illness requires a lot of energy to recover, and that means we just don’t have energy for other things, including socializing. That’s just as hard on us as it is on you, maybe moreso because we’re also cutoff from the rest of life.

If you do manage to catch up with us and we’re grouchy, rude, boring, or anything else that in normal social situations would seem insulting, it’s not about you. We may not even be doing it purposely as our bodies might just be doing their crazy healing thing.

Visits

Visiting the sick is considered a noble act in most cultures. It’s a big part of Christianity as priests rove hospitals looking for parishioners to sit with. The first thing that happens when someone is struck with a horrible illness is the request for visits. Everyone wants to visit! People you even didn’t know cared that much want to come by and see you.

Since I’ve become terribly sick with Lyme disease, I’ve refused almost every visit request. Some friends have been insulted by this. I really don’t have enough energy to care. While a visit seems like the nicest thing a health person could do, taking the time out of your busy schedule to stop by, it puts a lot of stress on the sick.

You see, even though we’re the ones who are sick, we are constantly trying to make everyone else around us feel better about how sick we are. People ask how we’re feeling all the time, and want to hear that we’re better than we were before. But the truth is, sometimes we’re worse than we were, but telling you that will upset you, so we lie.

The cumulative effect of these little lies is crushing. We’re constantly managing perceptions for everyone, and meeting face-to-face requires an overwhelming amount of that. There’s no where to run and hide, no acceptable delay to figure out the right way to say things.

On top of that, most people who want to visit want to talk. For the seriously ill, talking requires a lot of energy. Therefore, forcing the sick to talk is robbing us of vital energy we need for healing. Remember, having a conversation will mostly make you feel better and make us feel worse (even doctors know this, that’s why they limit visits for seriously ill people to immediate family only).

The few people that I’ve said okay to visit have been my mother (naturally) and a select few close friends. These are people I know are there to care for me, not to make themselves feel better. They’ll do whatever I want, including errands or just sitting in silence (oftentimes the best thing).

Do’s and Don’ts for visits:

• Do ask if you can visit.
• Don’t be offended if we ask that you not visit. Remember, it’s not about you.
• Do ask if we feel like talking before starting a conversation.
• Don’t ask a lot of questions. That’s not a conversation, it’s an interrogation.
• Do offer to hold our hand. Sometimes we really like that.
• Don’t try to touch us without asking permission first. Sometimes we’re in a lot of pain and touch makes it worse.
• Do be prepared to sit in silence if we don’t feel like talking.
• Do tell us stories about things not related to our illness.
• Don’t stay too long. We will feel rude asking you to leave and we might not even have enough energy for that. Plan on leaving after an hour unless we’ve asked you to stay longer.

Communicating

The seriously ill are lucky these days. Not only do we have excellent medicine but we also have numerous ways to communicate. You no longer need to make a phone call to check on someone, you can text or email or IM or video chat. This is a tremendous relief to us because we can still communicate with the outside world in a way that feels appropriate for us.

The healthy are either curious about the sick, and so ask a lot of questions, or else very timid because they just don’t know what to say. How can you comfort someone who’s in the midst of so much suffering?

First and foremost, choose the least energy-consuming way to communicate. What is that? The old-fashioned snail mail card. It’s really nice to receive a card with some kind words. Cards are primarily a one-way communication mechanism; no response is required. That’s greatly appreciated because we don’t have a ton of energy and we realize that you know a response isn’t required. Even if the card says nothing other than “thinking of you,” it will always be welcome.

If you’re close, then an email is a nice way to have more frequent communication. Similar to cards, these do not require a response, and if they do, the response need not be immediate. Still, it’s nice if you specifically say, “please don’t feel obligated to write back, I just want you to know that I’m thinking about you.” As with visits, sometimes we feel rude for not doing what is the socially acceptable thing, and you reminding us that we don’t have to puts us at ease.

Text messages and phone calls should be limited unless you’re very close. I do enjoy receiving periodic texts from people when I know they don’t expect much in response. “Just saying hi!” is always a nice text to receive. Phone calls should be left for only the closest of friends and family, since they require a lot of energy and immediate responses. That can be a lot of stress for us.

Do’s and Don’ts for communication:

• Do use the least energy-consuming way of checking up on us. Cards are best, emails are next.
• Don’t call unless we ask you to. Not only are phone calls energy-consuming, but you might wake us up from sleeping inadvertently.
• Do send us messages to let us know you’re thinking about us.
• Don’t ask a lot of questions when we respond.
• Do tell us about things other than our illness.
• Don’t try to compare your everyday aches and pains to what we’re going through. This isn’t empathy; it’s insulting.
• Do empathize if you have battled the same illness. We like to know we’re not alone.
• Don’t use this as an opportunity to promote your religion to us. This is inappropriate unless we normally discuss religion with you.
• Do send small gifts if you feel the need.
• Don’t send flowers, perishable items, or anything that requires care unless we ask. We don’t have the energy to care for anything but ourselves. And sometimes not even that.

Helping

We need and want your help, we really do. However, we are often to ashamed to ask for it. We don’t want to be a burden on anyone and, as such, we often will not ask for the things we need. This has been a personal struggle for me as I’ve battled Lyme disease — it’s very hard for me to ask for help from people.

Many healthy people realize this and will explicitly ask, “is there anything I can do to help?” Unfortunately, despite the good intentions, this triggers that same feeling of not wanting to ask for something. It’s guilt, for no good reason. We should absolutely not feel guilty taking someone up on help if they offer, and yet we do.

There are probably societal reasons for this. At least in the United States, it’s common for people to politely offer to help with the implicit understanding that they would prefer not to. Everyone asks “how are you?” without actually wanting to know the answer. It’s part of our cultural norm and most days it’s harmless. It’s only when serious illness strikes that all of this politeness starts to wield its destructive force.

So how can you help if we don’t tell you what we need? The answer is pretty simple: ask if we need specific things. Most seriously ill people need the same basic things and you can help by asking if we’d like you to do them. Here’s a basic list.

1. Food shopping — we still need food in the house. It’s helpful if you can come up with a shopping list yourself by looking in our kitchen. Then share the list and ask us if anything is missing (this limits the amount of energy we need to spend).
2. Cooking — even though we have food in the house, we may not be well enough to make meals. Offering to cook a meal, or a bunch of meals that can be frozen and reheated, is a tremendous help.
3. Restaurant Food — this is one of the few treats we get. Picking up some food from a decent restaurant is a nice change of pace.
4. Housecleaning — naturally, we won’t be doing a lot of cleaning while we’re ill. Floor, windows, dishes…anything you can do to help is greatly appreciated. Also, taking out the trash is a huge help.
5. Laundry — we still wear clothes, and we still get them dirty. Doing laundry is exhausting and wearing the same dirty clothes all the time is depressing. Just putting on a clean shirt and pants can improve our day tremendously.
6. Transportation — between doctor appointments and filling prescriptions at the pharmacy, it’s really helpful to have someone who is willing to drive for us.

Keep in mind that it’s important to ask about these things in the right way. The intent is to indicate that you are specifically willing to do this and that you’re happy to. That will reassure us that we’re not taking advantage of you. Here are some examples:

I was going food shopping and I thought you could use some groceries. It looks like you need spring water, chicken, vegetables, rice, and tea. Is there anything I’m missing?

If it’s okay with you, I’d like to stop by and bring you dinner tonight. How about grilled chicken with vegetables and rice? Does that sound good?

I’m going to be in your area, so I thought I’d swing by and do a load of laundry for you. Is that okay?

Just this simple shift from asking a generic question to a specific one makes it clear that you actually intend to do the thing you’re suggesting. That frees us up from feeling guilty for taking you up on your offer.

Do’s and Don’ts for helping:

• Do be specific about how you’d like to help.
• Don’t make work for us in your attempt to help. For instance, be sure to unpack and put away groceries rather than leaving them on the counter.
• Do offer to help again another time if you’d like to. This lets us know we can depend on you in the future.
• Don’t feel obligated to help on an ongoing basis. Even just helping one time makes a huge difference and is greatly appreciated.

Conclusion

Helping the sick is a really nice thing to do. We need your help and benefit greatly from even the smallest of consideration. But we do need you realize that the help needs to be in a way that allows us to continue down our very difficult healing path without worry. We are already feeling isolated and alone, and many of us are depressed. The last thing we need is to feel pressured into doing things we’re not up for doing or to make you feel better about how horrible we feel.

Of course, everyone is different. This article is just a starting point for understanding how to help those who are dealing with long-term illness.

We love you. We need you. Just be there for us in the ways in which we can accept your help.