Twelve suggestions for talking to people with chronic illness
Disclaimer: This post is in no way intended as a rebuke of anyone in my life. I am blessed to be surrounded by caring, compassionate people and have no complaints about how my friends and family treat me when I am sick. But I do hope this post can help and encourage even those with the best “bedside manners” to feel more confident and comfortable when talking to someone who is sick.
If there is anything that having MS for 20 years has taught me, it’s that there is almost nothing that creates more awkwardness for people than when they have to deal with a loved one who has a chronic illness. For it is there that we come to the end of ourselves. It is there that we discover how “useless” we are, how unable we are to fix what is broken, and how insufficient words can be. In this post I hope to help my readers learn how to deal with friends and family who are dealing with chronic illness.
1. Expressions of support and love are always appreciated. Do not hesitate to say, “Just want to let you know I’m thinking of you, praying for you” etc. It may seem inconsequential, but is one of the most important things you can do. Just say what’s on your mind.
2. Pity is not needed. Empathy is feeling a sense of compassion for the struggling of another person. Pity is the sense that someone else’s struggle somehow lowers them below others, makes them less human, or sets them apart from what the rest of humanity experiences. People with chronic illness are people. We feel the same emotions you do. We even feel awkward sometimes towards people who have other illnesses, or towards people who have the same illness that has progressed faster and is more severe.
3. Remember that the person with the illness feels awkward too. This is because they know that their illness is awkward for others. We’re all in this together. It is for this reason that…
4. Awkward jokes are unnecessary, but tolerated. At least by me. People who make strained jokes about my disease out of their own anxiety are usually just trying to connect, trying to make the best of a bad situation. Though often annoying, this is forgivable because their heart is in the right place. Usually. This is to be contrasted with genuine humor which is always welcome.
5. If you do not have a chronic illness, you are more upset by my disease than I am. Take that as fact. When you are confronted with a person you love who is sick, you naturally project all your fears and worries about illness and disease onto that person. It reminds you that it could be you, or one of your children. Your world feels a bit scarier, a bit less safe. I get it. The same thing happens to me with people who have diseases that, because I am less familiar with them, are scarier to me. Realize that a lot of the emotion you might feel around sick people has more to do with yourself than it does with them. This is natural, and it’s okay.
6. Let the sick person take the lead. If you express compassion and support and they say, “It’s tough today but I’m okay,” then go with it. You don’t have to feel obligated to take your support beyond the level the sick person seems open to. If however you express compassion and the sick person says, “Today is brutal. I don’t know how much more of this I can take,” that is an invitation — not to fix what’s wrong, but to listen and continue to be supportive. That’s all you can do, and fortunately that’s all that is needed.
7. Do not worry that if you mention it, it will “remind” the person that they are sick. The person already knows they are sick, and they think about it a LOT. They have accepted the basic fact. Your saying something to them, or asking them about it, is not going to cast them into a panic, or into a depressive episode. They will appreciate that you were thinking of them. It’s always better to ask than not to ask. So ask when it occurs to you. But don’t be awkward about it and make it a priority to ask about it every single time you see the sick person. It’s okay to live life normally. That’s exactly how the sick person is trying to live — as normally as possible.
8. Research the condition that your loved one has. I have MS, so the National Multiple Sclerosis Society is a great source of info about symptoms, course, treatment, and support for people with MS. If someone you love has cancer, go to the American Cancer Society website and research their specific type of cancer. It’s easier to be supportive if you are informed.
9. Related to the above, be careful about excitedly telling sick people about miracle cures for their illnesses. They want to get well far more than you want them to get well. And they have had their hopes raised and dashed dozens, perhaps hundreds, of times before. For example, some people with MS respond well to bee stings. My course is very mild, and in the case of bee stings the treatment would be worse than the disease. Sick people have very personal reasons, often with a lot of history and experience behind them, for the treatments they choose and reject. If you want to present information about cures and treatments, be careful not to patronize. Realize that the sick person you are talking to is likely an expert on the disease you’re talking about. Mostly, keep your conspiracy theories to yourself, about how the big drug companies just want our money, and really we could all be cured if we’d just have our metal fillings removed, or go on that new whale blubber diet, or pee standing on our heads, etc. We know you love us and want us to get well, but a person with chronic illness is the wrong target for experiments with conspiracy theories. Speaking personally, every chronic disease-related social gaff is forgivable, except this one. This is the only one that makes me angry.
10. Unless you’re talking to someone newly diagnosed who is still in the freaking out/fearful stage, stories of how your uncle or aunt or roommate has/had the same disease and did fine will not be very helpful. Those stories, however, are appreciated as a way of connecting, a way of indicating that you have some knowledge of the illness because you have been closely connected to someone else with the disease. Those can lead to excellent conversations, and the person who is sick might find you to be someone they feel very comfortable talking to about it when they want to.
11. Flip comments like “cheer up,” or “God won’t give you more than you can handle” or “Look on the bright side” are not helpful and are often not appreciated by sick people. They need support and encouragement, not suggestions that there’s something wrong with the way they are suffering.
12. The most common thing people say to suffering people is “If there’s anything I can do, let me know.” Don’t bother with this. Everyone says it and, speaking personally again, on the few occasions where I actually have called and asked for something I needed, the person was usually unavailable, although very apologetic. So skip saying “If there’s anything I can do,” and just think up something that you would appreciate, and do it for that person. Mow their lawn. Bring dinner. Have their oil changed. Clean out their car. Buy them a movie and bring it to their house. Do something special for their kids. Send a card. Send a donation in their name to the primary organization representing their disease. It really doesn’t matter what you do. What matters is that you move beyond the vague but well-meaning “if there’s anything I can do” into tangible action.