Posts Tagged ‘friends and family’

How to Deal With Others When You Have a Chronic Illness

Sunday, April 11th, 2010

When someone wanted coaching sessions with me, I used to send them a questionnaire to fill out before the session. In it, I asked how they felt supported by their family and friends, and then I ask how they felt unsupported by those same people. From the large collection of answers I received over many years of coaching people with chronic illnesses, I learned what they want but don’t get from others, and I learned about the relationship challenges and difficulties people with serious chronic illnesses have. In this post, I’m going to share that knowledge with you. Then I’m going to describe some strategies and methods you can use to get support from the people in your life and have the kind of relationship you want with them.

The first thing I learned is that, more than anything else, there is one thing those of us with chronic illnesses are not getting from other people that we really want: understanding We want others to know how hard it is for us, both physically and emotionally, to live with a chronic illness. It’s not surprising to me that not getting the understanding we want is such a common problem,  because I don’t think it is possible for a person who has never had a chronic illness to truly know what living with one is like.

That said, it is almost always possible to get more understanding from others than we currently do. The best way to do that, in my experience, is to avoid complaining about not being understood and to not criticize the other person for not giving us the understanding we want. Instead, what works best is to tell him or her how important being understood is for us and how appreciative we are when they try to give us understanding. Then, to help the other person better understand our symptoms and pain, it can be very helpful to describe them by comparing them to pain the other person has experienced, such as a kidney stone, or pain they can imagine, such as having a root canal without anesthesia.

Another thing I learned from people’s answers to my questions is that many of us with chronic illnesses have family members and friends who either don’t believe we’re as sick as we say we are, think our problems are in our heads, or think we are sick by choice as a way to avoid having to do things like housework and going to social events.

There are several possible strategies and methods for dealing with that kind of situation. Which ones to use depends on who it is that doesn’t believe you, and how important he or she is to you. If the person is a distant relative or a casual friend, you may choose to just avoid interacting with them. But avoidance is not a good strategy if the person who doesn’t believe you is a good friend, a parent, or your spouse.

Before I give you a specific method to use to resolve or at least improve the problem I’ve just described, I strongly recommend that you give yourself extra compassion for the emotional pain that having someone important to you disbelieve the severity of your illness inevitably causes. If you’ve read my other posts, you know that giving yourself lots of self-compassion is something I recommend often, because I strongly believe it is very helpful for those of us with chronic illnesses.

Depending on whom it is who doesn’t believe you, the history of your relationship with that person, and other factors, there are several possible methods you can use to improve or resolve the situation. One that often works well is the following: Instead of trying to convince the other person that what you’ve told them about your illness and its symptoms is true, accept the fact that they don’t believe you and let them know that you’ve done that. Then politely ask them if they would be willing to imagine what it would feel like to have a chronic illness, tell someone important to them about it, and not be believed. If they do, and chances are good that they will, you will at least have gotten some understanding from them that you didn’t have before, and it’s likely that they will start to let in and acknowledge the reality of your illness and its symptoms.

The next thing I learned from my respondents’ answers was actually a confirmation of something I already knew from my own experience as a person with a serious chronic illness: people often ignore or tune you out when you tell them about your ongoing struggles. Some respondents said their friends did more than ignore them; they abandoned them. When people in your life do any of those things, I again recommend (at the risk of sounding like a broken record) that you give yourself lots of compassion. I frequently ask my clients to tape reminders to do that to their bathroom mirrors or suggest that they wear rubber bands around their wrists to help them remember to give themselves extra compassion.

In addition to ensuring that you’re getting extra doses of compassion, there are some other things you can do when people tune you out. One is to make it a point to temporarily set aside your illness symptoms and problems when you meet your friends, and ask them, in a way that shows them you really mean it, how they are doing, what their concerns are and what successes they’ve had. When you consistently do that, you will usually find that they will show you the same concern and give you the same support in return.

Another thing you can do when friends tune you out or when they abandon you is to find and make friends with people who have the same illness you do. You can do that face to face in support groups, by phone in telephone support groups, and via computer in online support groups. Most major cities have support groups for the more common chronic illnesses. If there isn’t one for your illness and if you’re willing to do so, there’s a good chance you can start one by first connecting with other interested people through the websites meetup.com and craigslist.org. The advantage of the telephone and online support groups is that you can participate without leaving your home, so you don’t need to be concerned about mobility issues and other challenges that might make it difficult to attend an in person meeting. The website yahoogroups is a good starting place for looking for an online support group, as there are groups for almost any illness you can think of.

I titled this post “How to Deal With Others When You Have a Chronic Illness,” but it’s also about how you can get your need for understanding and support from others met. I hope the suggestions I’ve shared with you help you do that.

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I help people with chronic illnesses (I have Crohn’s disease myself) meet their many challenges and then find and follow a path to happiness and fulfillment.

Get my free report, Has Living with a Chronic Illness Worn You Down? Learn How to Outsmart Your Illness and Have a Much Better Life.

How to Have a Meaningful Life When You Have a Chronic Illness

Sunday, August 23rd, 2009

It usually seems to be the case that having a chronic illness diminishes our lives. From traveling to eating to working and playing, we feel limited by how much and for how long we can do the things we want to do. However, it is very possible – and it can be incredibly satisfying – to use our illnesses as a way to add to our lives, by making them more meaningful. In working with people with chronic illnesses for many years, I have observed that many of them already do that, and I’ve had the rewarding privilege of helping others do the same. In this article, I’m going to share with you some ways people with chronic illnesses have found to have more meaningful lives because of – rather than in spite of – having a chronic illness, and I’m also going to share my thoughts and suggestions for how you can do the same.

A couple of things many of my clients did that made their lives more meaningful were to be much more appreciative and grateful for their friends and family than they were before they became ill, and to take advantage of their illness-caused slower walking and moving through life speed to really appreciate the natural beauty around them – beauty they often hadn’t noticed before. If you are doing either or both of these, great! If not, what would your life be like if you did?

A simple but effective way to use your chronic illness to have a meaningful life is to just live the best you can. I don’t think most of us are aware of how much we can and do inspire others when we do that. Maybe it’s really hard for us to get out of bed and do all the things we need to do to take care of ourselves, our families, and get through each day, but we do so as well as we can without thinking that it’s anything special. But those who know how hard we struggle will often see what we do as an inspiring demonstration of courage and fortitude.

I’ve seen this in my brother’s marriage. His wife has multiple sclerosis and is in pain a lot of the time. It’s a major effort for her to get out of bed every day, but in spite of that she almost always has a cheerful disposition and a positive outlook on life – and because of that my brother refers to her as his heroine.

I also saw this kind of demonstration of courage and fortitude in a client I had several years ago, although at first he didn’t see it. He was worried that, because of his illness related limitations, he was being a poor father figure role model for his two young sons. He wanted to show them that a father is the breadwinner, that he helps around the house, and that he spends a lot of quality time playing and doing other things with his sons. But because of his illness, he couldn’t work and couldn’t spend much playtime or other time with his sons. There’s no question that his sons missed out on some quality father son time with their dad. But that fact notwithstanding, they saw their seriously ill father doing his best to be the best father he could be and living his life as well as he possibly could. By doing that, he was an excellent role model for them and I’m sure had a very positive impact on them as well.

My next suggestion for having a meaningful life when you have a chronic illness is to find ways to help others who also have chronic illnesses. One way to do that is to go to chronic illness support groups. Obviously the vast majority of people who go to support groups, both the live and online ones, do so to receive support. But you can go to them for a different reason: to share what you’ve learned about how to live the best life you can with others who want and need that knowledge. The people you help will almost always be very grateful and you will feel good for the difference you make in their lives.

Before I invite you to decide on how you will use your illness to bring more meaning into your life, I want to tell you about Zolisa, a woman who called me from London several years ago and told me her story. Zolisa, who acquired AIDS from her ex-husband, was an immigrant from South Africa.  In her culture, women were expected to acquiesce to their husbands’ demands for sex, even if doing so put their own health and lives at risk. Zolisa knew that she was not alone; she knew that other women who were also immigrants from South Africa were still following the established custom of acquiescing to their husbands. She decided that she had to do something to stop these women from becoming infected with AIDS, so she made it her mission to empower them to stand up to and say no to their husbands. She told me that doing that was very meaningful for her. In fact, it became so meaningful that she told me that even if it were possible for her to turn back the clock and to have never gotten AIDS in the first place, she would not do that.

Now it’s your turn. I invite you now to think about what you’ve learned from having your illness, what aspects of life are important to you, and with those in mind, decide on the best way for you to use your illness to bring more meaning into your life.