When someone wanted coaching session 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 ended up being 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.
Tags: friends and family, pain, parent, relationships, self compassion, spouse, support, support groups, symptoms, understanding
Excellent post, Tom. Your suggestions for ways to communicate with others regarding our chronic illnesses are gentle and thought-provoking. Chronic illness can be terribly lonely; after being disbelieved or rejected enough times by family members and friends, it’s easy to simply give up. We forget that “self-compassion” you suggest, and even begin to question our own illness, pain and feelings.
Thanks for this post. I’m sure it will be helpful for many people with chronic illness. Peace to you.
Thanks for this wonderful post. I want to add something that I’ve learned after nine years of chronic illness. In the early years of the illness, when I’d start a new treatment or see a new specialist, I’d explain what was going on in detail to my family and close friends (usually via email). I’d get back a supportive sentence or two. Then I realized that my relationship with them would be much richer if I found subjects other than my illness to talk about.
Of course, I keep them informed about what’s going on with me, but now I ask them questions about their lives (they have problems too, after all) or I find something non-illness related to talk about. It’s definitely enriched my relationship with family and friends.
Thank you, Wren. I’m glad you found my post helpful.
One healing technique I don’t think I’ve written about yet is this: I’ve learned that we can heal emotional pain from things that happened to us in the past, such as being repeatedly disbelieved or rejected, by getting in touch with the person we were then, i.e., the one who felt that pain, and having as much compassion for him or her as we can.
Warmly,
Tom
Thank you for your comment, Toni. You make a very good point. I’m sure there are many people who read my blog who would benefit a lot from heeding it.
Best wishes,
Tom
I love your strategy for non-believers! Thanks, I will definitely be keeping that one in mind!
I think that after 5 years with my illness, my grandmother only started to believe me when another woman with the same illness got a lot of media attention. The woman is a lot sicker than I am, but I think seeing that got my Gran to understand that what i have is real.
My mother thinks I need an attitude adjustment and to stop using my disabled parking pass. I’m pretty sure she didn’t speak like that to her brother who died recently of cancer…
I found a way to show my husband what it is like when he thinks he is being amusing and exposing me to unexpected bursts of strong light (i have light sensitivity as one of my many symptoms). One day I asked if he would to know what it felt like when he did that. He thought it was amusing and said Sure! I flicked him hard right in the centre of the forehead – cruel I know… He wasnt expecting it, and I think he was a little put out, but his “amusing” light bombs have never happened again. Feeling someone else’s pain is not so amusing!