Daria Kutuzova, psychologist. Photo from the site pismennyepraktiki.ru From the author My name is Daria, and all my adult life I have been surrounded by people who have chronic diseases. It happened that way. I’m also a psychologist; I am very interested in how the human experience works, how we are affected by the relationships in which we are involved, and how it is possible to maintain the ability to see meaning, enjoy, love and act intelligently and skillfully in a variety of difficult situations. Over the last year, I have been trying to understand how the life world of a person living with an illness and his loved ones works, and how this life world differs from the life world of a conditionally healthy person. I would love to do everything I can to help people living with chronic illness suffer less from depression and social isolation. To figure out how this can be done, I think, read and ask, and share the results with you. If they help you with something, support you, I will be very happy. All people living with a chronic illness, sooner or later, are faced with the fact that those around them, wanting good (in their understanding), say something that makes them worse. There are two sides to this situation.
On the one hand, a person who speaks words of support that hurt may simply not know how they are heard “on the other end of the line.” It’s just how people say it, he heard others say it, learned it and now says it himself, without imagining what the effect actually is. And I am sure that his good intentions are clearly heard in what he said. (This is just not a fact.)
On the other hand, many people living with a chronic illness also suffer from depression. Depression creates a certain filter of perception, due to which much of what can be interpreted ambiguously will be interpreted in the worst possible way. In depression, it can be difficult to hear good intentions behind the crooked wording. This requires a resource, but there is none.
So, inspired by an idea from Jena Whiston of The Mighty.com, an online community where people write about their experiences living with a chronic illness, I decided to put together a “phrase book”: what people usually say to support what they mean , how this can be interpreted (especially through the filter of depression), and what you can try to say instead of the first expression.
“You don’t look sick!”
The implication is: “You look great! I’m giving you a compliment to make you happy.”
You can hear: “You’re a malingerer, you’re not really sick, I know what truly sick people look like. Now you will have to prove to me that you are sick and feel unwell.”
What you could try saying instead: “You look great today. How does that make you feel?”
2. “Can’t come today again?” / “Do you have a good reason again today?”
Implied: “I am very sorry that your illness does not allow you to live the life you want.”
You can hear: “I’m disappointed in you, I’m already bored, I won’t invite you anywhere else.”
What can you try to say instead: “Let’s tentatively plan to meet on Friday, and if you can’t get out of the house, then I’ll come to you, or we’ll reschedule.”
3. “I know how you feel.”
Meaning: “I can imagine how hard this might be for you right now.”
You can hear: “I don’t care how you really feel, I’m rushing to conclusions, I don’t want to pay attention to you and delve into it.”
What you can try to say instead: “Help me understand what is happening to you, how the disease affects you”
4. “Tell me if you need anything.”
Implied: “I am always ready to help”
It is heard: “I will not take the initiative to help you. And, in general, I don’t care that it’s difficult for you to formulate what kind of help you might need, and that it’s difficult and awkward for you to ask for help yourself.”
What can you say instead: “I’m going grocery shopping / to the pharmacy / to the hardware store. What should I bring you?
5. “Well, at least it’s not ___________ (most often “cancer”)”
To understand how tactless this sounds, you can imagine the opposite situation, as if you came to a person who has been diagnosed with cancer and told him: “Well, at least it’s not Huntington’s disease or amyotrophic lateral sclerosis...”) Disease is not a “who is worse” competition.
Implied: “I am very afraid that something terrible might happen to you, and I want to believe that it will not happen to you. I have my fears, and when I hear that what you have is not what I am afraid of, I feel relieved.”
One hears: “I devalue your suffering, you have no right to complain and ask for attention, you do not deserve help and consolation.”
What can you say instead: “I understand that you are probably very scared right now, sometimes a lot of dark thoughts come to your mind. What helps you cope? I'm with you no matter what happens."
Photo from familydoctor.org
6. “You are strong, you can handle it! You’ll see, everything will be fine again soon” or “Everything will be fine, I found out!”
The implication is: “I want to believe that this difficult period will pass and your health will return.”
You can hear: “I’ll leave now, because it’s too hard for me to be with you when you feel bad, and you’ll have to cope on your own.”
Instead, it is better to say: “I am with you, no matter what happens.”
7. “My deskmate’s cousin had the same disease, he drank water with lemon in the morning, and now everything is fine.”
The implication is: “I really want to believe that what you have is curable, and that you can find a simple remedy that will help you feel better.”
You can hear: “I don’t want to take what’s happening to you seriously, I’m not ready to be with you when you feel bad, so I need you to feel good quickly.”
Instead, it’s better to say, “I’m really sorry that things are so hard right now. I would really like to do something to make it at least a little easier. What can I do for you now? What’s better - to listen, try to distract, something else?”
8. “I couldn’t live like this / I would die”
The implication is: “Living with an illness requires enormous strength and courage from you.”
One hears: “A life like yours is not worth living, there is nothing valuable in it, die.”
Instead, it is better to say: “I really sympathize that it takes so much effort to survive. And I understand that there are many important things that you want to do and try to do, despite your illness. Let's talk about it if you want?"
9. “Get well!”
(addressed to a person with a chronic disease - especially incurable and progressive)
This means: “I really want you to feel better soon.”
Heard: “I do not believe that you have a serious chronic illness, and I believe that changing your condition for the better is your responsibility, you do not get better simply because it is profitable for you to be sick.”
Instead, it is better to say: “I hug you carefully, if you allow me? May you feel better soon. I’ll be in your area the day after tomorrow, I’ll call you when I pass by the store, I’ll buy it, whatever you say.”
Photo from massgeneralcancercenterpx.org
10. “God does not give a person more than he can bear.”
The implication is: “I know you feel very bad, but I believe that you have the strength to get through this difficult time.”
You hear: “You get what’s fair, God needs you to suffer for some reason, I’m an expert on what God has planned for your life, and I don’t care whether you believe in God as much as I do or not.”
Instead, it is better to say: “I am very sorry that this is such a difficult time. I'm with you. Let’s discuss—now or later, if now is not the right time—what I can do to make it at least a little easier for you during this difficult period.”
11. “You just need... (go outside more often, drink more water, smile, etc.)”
The implication is, “I really wish there was something simple I could do that would make you feel better.”
You can hear: “I haven’t delved into the specifics of your illness (and I don’t want to, because I don’t see the point in it), but I consider myself an expert on how to live correctly, and I also consider you an idiot who didn’t figure out on his own what he should do better to feel better.”
Instead, it’s better: “I read about your disease on the Internet, and some things became clearer to me, but many things became more unclear. And I understand that different people with the same diagnosis have different experiences. Can I ask you about something that makes you feel better?”
12. “Illness is a message from your soul telling you that you are not fulfilling your destiny” or “God is trying to teach you something”
The implication is, “I want you to be healed; I don’t understand why this happened in your life, and I want to find the answer to this riddle so that health can return to you.”
It is heard: “I am an expert on what you need to do and how to live. You live wrong, so you deserve to get sick. It's your fault that you're sick."
Instead: “If this is not too personal a question and you would like to talk about it sometime, I would be very interested to know what you consider especially important in life now that you have been ill? What would you like me to also learn to see and understand?”
13. “It’s good for you, you don’t have to go to work.”
The implication is: “I want to cheer you up, help you find the positive aspects of your situation.”
It is heard: “I cannot imagine and do not want to imagine and delve into what it is like to live with such pain and fatigue that you cannot leave the house, these endless painful hours, loneliness - and the poverty associated with the inability to work.”
Instead, it’s better: “Sitting at home all the time is probably sad and lonely sometimes?.. What supports and pleases you, how do you fill your time to make it easier for your body and soul? Do you want me to bring you or send you (something that makes you happy)?”
14. “Hold on!”
It means: “Take care of yourself, take care of yourself, unfortunately, you will have difficult times ahead for quite a long time, you are important and dear to me, I love you, I really want you to survive and cope.”
One hears: “You are alone in this, you have no right to show weakness, uncertainty, confusion, if you “fall to pieces,” no one will need you like that.”
Instead, it’s better: “I’m very sorry that this situation happened. I understand that it will not be resolved quickly (although I would like to, of course). Tell me, will it be somehow useful and supportive if I write to you every day in the chat, for example, and ask how you are and why you are doing well today, or send me kind pictures, or both? And I can always whine, so if you need to whine, come and whine, dear.”
Photo from dyingmatters.org
15. “I read on the Internet that vitamin C is very helpful for your illness.”
The implication is: “I’m thinking about you, I really want to help you to make it easier.”
It is interpreted: “She thinks that I was banned from Google, and that I am so weak, childish and stupid that I didn’t look for information myself and don’t know anything about my illness.”
Instead, it’s better: “I really want to help you with something to make you feel better, and I’m trying to figure out how your illness is generally treated. I did some reading, but I understand that everyone gets sick differently. I can’t stop looking for options on how to help you, but I don’t want to impose my findings if they are not needed. If you are interested in my findings, can you tell me what the doctors recommend to you, what you tried works, what doesn’t work, and what you haven’t tried and won’t?” (This is an option if you are close enough people.)
16. “It’s too early for you to have this disease!”
The implication is: “I’m very sorry that at this age you already have the symptoms that we see more often in older people, I’m very sorry that the disease is robbing you of opportunities.”
It is heard: “You have no right to feel what you feel. Or are you lying, because at your age such symptoms don’t happen, I know, I know everything, I’m an expert.”
Instead, it’s better: “I’m sorry that you have this disease... I don’t really understand how it affects you, what is difficult for you now. Explain to me? I want to know how best to help you.”
17. “Did this happen because you (not) _____________?”
Implicit: “I want to know that I and my loved ones are safe. Tell me how I can protect them and myself as much as possible from such a disease?”
You can hear: “It’s your own fault that this happened to you, now get over it.”
Instead, it's better to say, “I'm so sorry this happened to you. I'm here, I'm close."
18. “Come on, look, Stephen Hawking/Nick Vujicic (any celebrity with a serious illness or disability) lives the same way!”
It means: “I want to somehow cheer you up, to say that you have many resources and opportunities in life, I believe that a lot depends on your life position and attitude.”
One hears: “You are an egoist, your suffering is insignificant and does not deserve attention, you must be “positive” all the time, because it’s easier for me this way with you, you must be a hero, and if you are not a hero, then this is not interesting, you are not I also coped with being a “proper patient”.”
Instead, it’s better: “I understand that sometimes it’s terribly difficult and disgusting for you to be sick, you get very tired of it. It's okay to stop sometimes and give yourself a break. Do you want me to hug you (at least virtually)? Let’s sit together in this dark time, and then it will definitely brighten up.”
19. “All diseases come from nerves. Stop being nervous and everything will work out!”
The implication is: “I want to believe that health will return to you, I want there to be more joy and peace in your life.”
One can hear: “I don’t want to delve into what’s wrong with you, I believe that what’s happening to you is not serious and does not deserve attention. I'm not interested in your life situation. The fact that you got sick is your fault, because you have the wrong attitude towards life, but I know how to approach life correctly.”
Instead: “I understand that illness adds a lot of uncertainty and stress. Would you like to tell us what is stressing and worrying you now? Maybe by telling us something will become clearer, and we can figure out something to do about it?”
20. “You should go to a psychotherapist, would you like me to give you the phone number of a friend?”
The implication is: “I see how bad you are, and I really want you to feel better, I want to help, but I’m afraid I won’t be able to cope myself or will make things worse, so I want to attract as many help resources as possible.”
You can hear: “I don’t want to listen to you, I’m bored, your problems are too terrible, they destroy me, I run away and get rid of myself. They will pay attention to someone like you only for money (and it doesn’t matter to me whether you have it or not).”
Instead: “I understand that you are going through a difficult period right now. You are my friend, and what happens to you is very important to me. Let’s talk, hopefully this will help in some way - and if we feel like it’s not helping much, we’ll try to figure out what else we can try to make you feel better, yeah?”
Mentions of successful celebrities who have a serious or terminal illness
In theory, examples of celebrities with disabilities or serious illnesses should encourage the interlocutor: “look, these people have similar problems, but they live full lives! And you can do this too, illness is not a death sentence!” In any case, for a healthy person these words sound like consolation. But such words can hurt a sick person. Mention of other, more “positive” sick people can be perceived as a complaint: “Why are you whining? Your suffering does not give you the right to be sour, you should be the same “hero” as Stephen Hawking...”
to myself
Photo from the site alzheimerssocietyofamerica.org
From everything I read in various sources myself and what my virtual interlocutors shared with me, I formulated several questions for myself that I try to ask myself when I want to support someone:
- How much of an expert do I consider myself on another person’s life? Do I think I know how he should live? Do I think that he himself doesn’t know how he should live, but I know better?
- Do I think that person is stupid, lazy, or banned from Google? Do I think that he chose bad doctors and is not able to distinguish a bad doctor from a good one?
- Do I think that everything that a person did until I appeared so beautiful in a white coat was wrong?
- Do I feel that I cannot bear that a person feels bad (and may feel bad for a long time), and I strive to “fix” him as quickly as possible so that I feel better, and at the same time I grab onto the first idea that comes across in the information field, without having bothered to figure it out?
- Do I think that because a person is in pain and bad, he has ceased to be an adult, has become stupid, has lost the ability to understand what is best for him and make decisions?
- Do I consider myself entitled to explain to a person what God, fate, karma, etc. wants from him? Do I think that I have access to intimate knowledge about this?
- Do I believe that this person has an obligation to report to me about his condition and whether he follows my recommendations, advice and directions?
- Do I think that a person who is sick and unwell, and from whom no one has relieved responsibility for his life and work, should spend time and effort educating me (obviously banned from Google) about his illness?
- Do I think that a person has no right to feel what he feels, and in general, I know that he feels, in fact, not what he thinks he feels? (oh how I wrapped it)
- Do I think that a person should be forever grateful to me for the fact that I am here trying to help him and support him?
- Do I think that if I am upset, scared and upset because of a person’s illness, he himself should console me in these upset feelings of mine?
Search for a higher meaning in an emerging disease
It may also be incorrect to try to search for the higher meaning of the disease, or to explain to a sick person “why and why God sent him such a test.”
It should be understood that for the sick person himself, this difficult life situation can become a source of reflection and re-evaluation of many life events. And everyone must determine for themselves why “fate sent me this disease”, and an outside opinion in this matter may be inappropriate.
Why do you and I need all this?
Image from istockphoto.com
I'm trying to figure out how I can better behave so that I can support my loved ones living with chronic illnesses without offending them with some faux pas; and how can I behave better when someone is trying to support me, but I find it difficult to perceive the words that the person said as supportive. To figure out how this can be done, I think, read and ask, and share with you the results of these researches. If they help you with something, support you, I will be very happy.
As Arthur Frank wrote in At the Will of the Body, “Genuine caring exists where there is recognition of difference.” Of course, ambiguous statements are not always interpreted in the worst way. A lot depends on the state of the listener and what kind of relationship he has with the speaker.
Of course, the alternative options for words of support that I list are not always suitable for everyone. People are different, situations are different. This material is not a “recipe guide”, but rather a springboard from which you can start; this is a reason to look for and formulate what is right for you. In many cases, simply speaking a good intention is a very supportive option.
My biggest hope for this post is that it may become easier to discuss things that are difficult to discuss, and that people who are already struggling with illness will end up feeling less socially isolated. Because it makes people feel much worse.
How can a nurse help a seriously ill patient?
Most people prefer to be sick at home. After all, it is within one’s own walls that a person feels comfortable and safe.
On the website 7hands.com you can choose a caregiver with experience caring for a patient with a similar disease. The questionnaires contain complete information regarding the skills and personal characteristics of applicants. Portal managers check documents and ensure that candidates and employers are honest with each other.
The cost of a nurse's services directly depends on the assigned duties. Most often, assistants do:
- sanitary and hygienic care (bathing, changing underwear and bed linen);
- cleaning the room (or the entire apartment);
- feeding (cooking by agreement);
- administering medications (setting up IVs, injections, catheters);
- moral support;
- assistance in moving around the house and outside;
- representation of the patient's interests.
On the 7Hands portal you can find a nurse or worker who knows how to help a seriously ill person. To care for cancer patients, it is better to hire an assistant who has special knowledge and qualifications in the field of oncology and palliative care.
Unsent emails
Photo from bufferapp.com
We all sometimes say something that offends the other person. And then, realizing what happened, we feel guilty. Sometimes we feel that it is too late to ask for forgiveness. But always, even if the person we hurt has died, we can write a letter, express how we feel, ask for forgiveness, and take responsibility to not hurt people in that way again. Such unsent letters heal us.
And if the person we offended is alive, we can edit what we wrote and send it to him without expecting any response. Maybe our recognition of responsibility for the pain caused will be healing for him too. Maybe he'll tell us about it. Or maybe not.
We all sometimes find ourselves wounded by the thoughtless words of others. Sometimes they, like splinters, get stuck in us and continue to hurt. Here you can also write about what happened. First of all, privately, for ourselves, to express what we continued to carry within ourselves (and no longer carry within ourselves). It can be painful—like removing a splinter—but it usually makes it easier. The main thing is to treat yourself like your best friend, have compassion for yourself and support yourself.
And here’s what will be useful to read about how to properly support people.
How to encourage a loved one
Since it is morally difficult to help a seriously ill patient, it is better to consult with hospice care specialists. In most cases, the patient needs nonverbal support. The very fact of organizing a comfortable stay at home and hiring household staff means more than any words.
Also, don’t wait for the person to ask for help. Approach the bed several times an hour, offer water or check the dryness of the linen. If it is not possible to organize round-the-clock care yourself, you can hire a caregiver.
Instead of banal words of encouragement, it is better to organize some simple leisure time: read a book out loud, watch your favorite films or old photographs together.
If you know that faith plays an important role in the patient’s life, then invite a priest to your home and arrange a joint Bible reading. The best gift and method of encouragement: sincere attention, time spent.
Important.
If you have promised a patient an evening of leisure, do not break this promise under any circumstances. There are many uncertainties and surprises in the life of a seriously ill person. Let at least simple joys and everyday little things go according to plan.
If you cannot visit the patient in person, be sure to stay in touch through phone calls and video chats. Take every opportunity to remind your loved one of your love.
Follow your interests
It often happens that you offer to help take out the trash - and suddenly you find yourself running a friendly household for the third week. Or you decided to buy medicine - and now every two days you drag five bags of groceries from the nearest supermarket. And the friend already seems to be healthy, cheerful, cheerful, blush and has not shown signs of illness for a couple of months. This is a clear sign, dear, that it’s time to turn off Mother Teresa mode and close down the field aid station: then he will figure it out on his own, and by the way, your dog hasn’t been walked for a week, the children have forgotten what you look like, and your husband has lost hope and is mastering the laundry programs .
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