Dealing with Friends*

Many people with chronic illnesses say that they have lost friends because of the illness. Comments I frequently hear include:

"Friends just drift away once you get sick"
"All of a sudden no one would call me to do things"
"My so-called friends told me they would stick by me, but it was all a lie"
"Who would want to be friends with someone who is 'damaged goods?'"
"People just can't handle my illness"

You can either click on the topics below or scroll down the page. I believe it is important that you read each of these topics, though.

A perspective
Reality
What role are you playing?
What do you do now?

A Perspective

First, let's consider the lessons we were taught since we were little....

If you are sick, you go to the doctor, the doctor prescribes you some medicine, you take the medicine, you feel better.
People get what they deserve.
You should help people who are sick; they will get better soon and your help will be greatly appreciated.

Now, let's consider what is going on with a chronic illness....

You are sick, you have been to the doctor, you take medication, but you have not gotten better (this is what makes your illness chronic).
Friends may have come to your assistance, but you haven't gotten better.
Most people have not had much experience dealing with chronic illnesses.

Based on these two lists, you can see that what we were taught since we were little does not apply well to chronic illnesses. You have to deal with the illness on a daily basis and you have probably come up with some ways to handle it. However, friends do not typically see you on a daily basis and they may not have much experience with chronic illnesses. Thus, your illness does not fit in with the lessons they were taught, so they don't know what to do. In other words, your friends have a major conflict going on -- they care about you, but what is happening to you does not fit in with what they were taught. So, your friends are going to have to resolve this conflict in some way.

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Reality

    First, life is not fair, and this lesson that "you get what you deserve" has never been accurate. No one "deserves" to get a chronic illness. Next, try to take a step back for a moment and think about your life before you developed your chronic illness. I believe that we all can think of individuals who were part of our lives (maybe even friends) for some time and then drifted out of our lives. Everyone has this experience -- whether they have a chronic illness or not. However, people with chronic illnesses find themselves in the position of providing individuals reasons for "leaving." It would be rare to come across someone who has a chronic illness who has not heard from at least one significant person: "I just can't deal with your illness. I thought I could, but it's just too much. It's not you, it's me that has the problem." Hearing this comment hurts! It often leads one to question whether every other significant person feels the same way.
    Now, remember that based on the perspective presented above, friends have a major conflict and have to resolve it in some way. Some people resolve this conflict by distancing themselves and "leaving." Now, this may make you angry, but if you think about what the relationship would be like if the person "stuck around," it may be better that the person did "leave." It may be a waste of valuable energy and time to try to keep a friendship alive in which the other person is conflicted, feels uncomfortable and would prefer to follow the lessons we were taught since we were little. We all resolve conflicts in our own way.
    The "benefit" of having the chronic illness is that you have probably "weeded out" those people who do not feel comfortable having a friend who has a chronic illness. Again, remember that everyone has people drift in and out of their lives, people with chronic illnesses are oftentimes just more sensitive to this because it is assumed that people are "leaving" because of the illness. If you meet someone and they do not seem interested or are only in your life for a very short period of time, realize that it could be due to many different things, not just your illness. If your illness is given as the reason that the person doesn't want to be around you, then realize that the person has chosen to resolve the conflict by distancing him or herself.
    The main point is that we have to let other people resolve the conflict in their own way. It is up to them to resolve the conflict, NOT you! In addition, if the person chooses to resolve the conflict by "leaving," then you cannot blame yourself or become very angry at your illness, because it was the other person's choice and you really had no part in that. However, please move on to the next section to learn/think about the role you are playing in friendships you have with others.

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What Role are You Playing?

This section is sometimes difficult for people because it involves taking a step back and really looking at what you are doing in relationships. Here are common behaviors or reactions people with chronic illnesses have:

Avoid calling friends or going out because it will upset friends or make them worry
Avoid talking about the illness at any time because it may upset or worry others
Never asking for help from others, even though it is needed
Avoid making plans because the symptoms are unpredictable and you don't want to have to upset people by cancelling at the last minute because it's a "bad symptom day"
Most conversations focus on the person's chronic illness and how they are doing/feeling
Expecting others to drop everything at a moment's notice because help is needed
Cancelling plans at the last minute because the symptoms are bad

Now really take a look at your own behaviors and see which ones on this list best describe what you typically do.

    If you find that items 1-4 best describe you, then you are isolating yourself in an attempt to protect other people. The problem with this approach is that people are still going to worry about you, and they are going to start assuming that you do not want their help or that you do not even want them in your life. Imagine if you were the friend of someone who has a chronic illness and you keep offering to help the person out or inviting them out to do things to get them out of the house and the person keeps turning you down. Chances are, you would drift out of that person's life.
    If you find that items 5 & 6 best describe you, then you are probably focusing too much on your illness. Other people are concerned and want to know how you are doing, but putting too much emphasis on your illness will eventually become the only focus of your friendship. Most people want to have friendships in which there are several areas of focus, not only one. Also, it can be very frustrating to be friends with someone with a chronic illness -- no matter what you do, the person does not get better, and this goes against the lessons we were taught as little kids. Friends can feel helpless and having your illness as the only topic of discussion reminds them of the fact that they cannot do anything to make you better.
    Many chronic illnesses involve symptoms that vary in intensity from day to day, and item #7 addresses this. Sometimes plans do need to be cancelled at the last minute due to a "bad symptom day." However, how you handle this can influence whether you receive invitations to go out in the future. For example, most people will understand if you cancel and explain that you're just not having a good day but you would like to do the activity another day. However, if this is happening with most plans, then you need to take a look at what is going on. Are you agreeing to activities in which it is unlikely that you would be able to do them? Are you focusing too much on the symptoms during the day that you are supposed to do something and you are becoming anxious that something bad will happen if you go out? Are you making evening plans on days that you are working or very active?
    Please move on to the next section for suggestions on how to change your own behavior to try to improve relationships that you have and will have.

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What Do You Do Now?

Hopefully, you have read through the previous 3 sections and have not immediately jumped to this section. If you did, please go back through the previous 3 sections so you have a basis to evaluate the suggestions listed below.

Do not give up looking for individuals to form friendships with. Yes, there will be people that "leave" or are not interested in you, but this is true for everyone. It is important to keep "shopping around" because you may find some real gems.
Let others help you when you need it, but do not abuse this. It is very difficult to ask for help, but most people respond positively to this.

Do not expect everyone to drop everything at a moment's notice because you have requested help.
If you feel very uncomfortable asking for others' help, then gradually try this out. Rome wasn't built in a day.

Give other people the opportunity to decide how they are going to resolve this conflict, and try not to become too focused or worried about where they are at in this process.
If you need to cancel plans, why not invite the person over to your place if you feel up to it? Oftentimes the company will make us feel better. If you don't feel up to having someone over, why not have a good conversation with the person on the phone that involves discussion of several topics (not just your symptoms).

If you do cancel plans, let the other person know that you are interested in doing the activity, you would just like to do it a different day (schedule the day, if possible).

If you are frequently cancelling plans, really look at what is going on (see questions at the end of the previous section).

If you are making evening plans during work days or days with much activity, try to make plans for days when you will be less fatigued (e.g., weekends).
If you are worried about something bad happening if you go out, then consider doing an "easy" activity first (e.g., going to a movie, going for a drive, going out to lunch, going out for coffee) that will be brief to "test the waters." If you believe that your worry and fear are significant problems, then get a referral to a psychologist who can help you work through the worry and fear.

Occasionally pay attention to how much your friendships focus on your illness (don't spend too much time monitoring this). If you are noticing that more and more attention is being devoted to your illness, then it may be time to work on other interests you and your friend(s) share.
Consider starting a "group gathering" in which you can have several of your friends do something together. Here are some examples of "group activities"

Starting a monthly or weekly poker (or other card game) group
Starting a monthly or weekly bunco (or other dice game) group
Starting a film or video group (watch a video and then discuss it)
Starting a book reading group (read a book and then get together to discuss it)
Starting a monthly or weekly charade (or other group game) group
Starting a "Sunday brunch" or coffee group
And about anything else you can think of

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More suggestions? Email Dr. Rokicki with them!

* This web page is designed to provide information and does not constitute development of a professional relationship. You are strongly encouraged to speak to the health care professional(s) who are treating your chronic illness to obtain a suitable referral.