Day 207. What to Say to Someone Who is Chronically Ill

 What to Say To Someone Who is Chronically or Gravely Ill

A few firsts: People who are sick, particularly the ones who aren’t going to get better, make many of us uncomfortable. Some visitors are squeamish because there’s an unconscious fear that even a genetic illness will be somehow contagious–they just prefer not to be around “sick energy.” It’s okay to get in touch with your own feelings about this sense.

Visitors are uncomfortable as well because those “hang in there because you’ll soon recover” kinds of comments we all have been taught to bring to the sick room simply are not appropriate with someone with a lengthy illness.

 Even if this is someone you have known for a long time, and maybe have had easy conversation in the past, perhaps suddenly you find yourself tongue-tied because she is different. There she lies in the bed, small and afraid. What the hell is there to talk about then? Or the co-worker who you shared an office with suddenly is in a full body cast. He may not be able to return to work and he’s only 45. What to say?

While things may seem different on the surface, remember that the essence of the person you know and love is still the same. Those changes and shakeups are massive for the person who is ill as well, so the biggest favor you can do is to be yourself.  If you are the kind of friend who is serious and always talks politics, then maybe that’s what you’ll want to do.  If you always tell each other jokes, well, then by all means, tell a few jokes (but try to leave ones about sick people out). Let your presence open a window and let a ray of sunshine in the room.

As you do it, know (or say) these things:

  1. There isn’t anything TO SAY. Know that there is nothing you can do. No one expects you to, either. If this really worries you, ask yourself who made you so important? It always cracks me up how a visitor can walk into situations where someone is sick, where he or she intends to help, yet ends up drawing the attention to him or herself by wailing: “Oh, I just don’t know what to say, Frances…..I just don’t know what to do….”.Okay, I have an idea for you, then: Stay home. If you can’t figure out how to act or talk, then stay home. Seriously. Figure out a sentence or something that you can contribute during your visit so you can stop that silly act. It’s not about YOU.There’s a lot of freedom in this hard truth. There is nothing you can do to make the person better. Leave that to the healthcare experts, unless you are one: one thing that becomes extremely tiring is when people second-guess the medical care the sick person is getting. Sometimes he will ask a good friend’s opinion, but otherwise, leave the suggestions alone.
  2. Walk a mile in my shoes. Think about what YOU would want to hear if you were the one with your foot in the air.It’s so hard to know what to say when you can’t feel the pain or make it go away, and you wish you could (you can tell your friend that you wish you could make the pain go away, if you mean it, but only so many times). Instead, imagine yourself in that chair with your foot up on a handful of pillows and feel the electric nerve pain (get way cranky from it, too). Now, what do you want to hear from people? I’ll bet you will think of something nice, straight from your heart.If you really did put yourself in that place, it may have occurred to you that in that cranky space, you don’t want to hear too much of anything. Tell a joke (maybe a short one). Do something you would normally do as friends: watch a movie, eat popcorn, gossip about other friends, play a video game, play blackjack. Whatever. It doesn’t need to be momentous. But when you don’t feel good, too much of anything is exhausting.
  3. Is this a good time?” (better yet, make very sure to schedule your visit). Sick people have trouble sometimes with drop-in visits. Sometimes they have trouble with scheduled ones, if their bodies aren’t cooperating. Make sure to ask if it’s a good time, and offer full forgiveness for rescheduling.
  4. How are you?” This is just fine, as long as the visitor says it in just the same way he would say it to another friend, and not in a worried tone with concerned eyes. Once again, walk a mile in my shoes. How would you like people to get all worried and say, “How are you, old chum?” forty-two times a day? But somebody coming in and saying, “Hey! How are you?” all cheerful might really cheer a person up. It gives the sick person permission either to talk about his illness if he needs to, or wants to, or just to gloss over it, if he don’t feel like it. Take the hint from which way he heads on that one. Got it?
  5. I understand if you don’t feel like talking about being sick.” Seriously. There’s no …but… after the “sick” in that sentence. Throw that sentence in any time the conversation gets personal. Please don’t “pump” for information. Your need to know is not more important than the comfort of the sick person, which is why you came in the first place.
  6. Hey, I brought cards (Yahtzee, Jenga, whatever) with me. Are you up for a game?” I love this. It takes all the pressure from the visitor (whew!) as well as from the sick person at the same time. Of course the sick person can always say, “Sorry, I am not up for that today.” But you still look really cool for having thought ahead and brought something fun to do. If you do end up playing, though, be prepared for play to go slowly, and be understanding about memory errors and the like. Whatever happens, sometimes the comfort of game time allows the sick person to open up and talk about what’s bothering them. Listening is all you can do. Remember, there are no solutions to what is happening.
  7. “I’ve got a coupon for a free car wash in my pocket. Can I take your car for a wash?” (You may have to stretch the truth on the existence of that coupon, but it will be for a good cause.) Getting things done for someone with a chronic illness like Rheumatoid Arthritis, Fibromyalgia, Traumatic Brain InjuryEhlers Danlos Syndrome (or any of the many chronic pain diseases) can mean that their day can last longer. I know that I am good for one event every day. My exhaustion tolerance allows me to handle driving, getting out of the car, dealing with whatever is there, and getting back in the car, one time. Then I’m finished for the day. When I do it twice in a day, I’m usually out for the next day or two. I am sure I speak for many when I explain my situation. So, by doing something that is relatively meaningless to an able-bodied person, it’s almost like creating a whole extra day in the week of the chronically ill person.
  8. Did you get an invitation to the x party? I’m going, and I’ll give you a ride there and back. I’d be happy to leave whenever you want to—in fact, I wasn’t planning to stay long at all.” I learned this from a friend of mine. If it weren’t for him, I wouldn’t get  to parties at all. Getting ready was challenge enough; driving downtown, finding a place to park, etc., etc. were challenges that seemed beyond my abilities. So when my friend, Jarrod called and offered to help, I started being more social. (Other friends followed suit.) Offer to help a friend get somewhere fun.
  9. “What’s your favorite movie/book/food, etc.?” It’s great to bring over some fun thing to eat or do, which you can leave with the person after you’re gone. I still have great movies and books people have brought me when I have been very sick and hospitalized. Take care to find out about food allergies common among the chronically ill. When I was in the hospital for five weeks, people were so kind and found out that I couldn’t have flowers in my room, so they sent Edible Arrangements of fruit that looks like flowers.  Yum!
  10. “This has been lots of fun, but I have got to run.” Huge mistake people make:  thinking sick person equals lonely person. When I come I am obliged to stay all afternooooooon. Oh, please don’t do that to a sick person. Here is the rule: Don’t stay too long. Don’t stay too long. Don’t stay too long. Have one conversation, maybe let the subject change once.  That’s enough, unless the person asks you to stay longer, or if the game is taking longer and she is enjoying herself.  You can ask, “How are you doing?  How is your energy level?”  But speaking for myself, it is very difficult to be honest—or to assess oneself properly.  A chronically ill person who is having a good time can easily miss the signs of exhaustion. After an hour or so, suggest that you can come back and finish the game another day.  You’re a great friend for coming to visit!
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