A client, I’ll call her Jane, was describing her feelings of isolation ever since she developed chronic fatigue syndrome (almost 3 years ago). She finds that as time goes on, she doesn’t want to talk about the illness or how she feels to anyone. Whether it’s a casual acquaintance a friend or family, Jane has a hard time with how people respond to her when she talks about her experience. Gradually, she’s stopped seeing people, unless she has to, and even hesitates to talk about it with her husband. But this feels lousy.
How much is enough and when have I said too much? The problem is that when you stop talking about it altogether, it makes living with chronic illness, an experience that can be pretty difficult in itself, really lonely.
The reality is that this isn’t an easy topic to share with others. People who don’t live with chronic illness have difficulty understanding what it’s like. It’s also hard for most people to hear what sounds like a problem without responding with advice. And, you don’t want to wear out those who do respond supportively. After a while your same story gets old, even to you.
This is what I’ve learned. I can’t control other people’s responses but I can recognize my expectations and control what I do. When I keep my tone matter of fact, people respond as if it’s a matter of fact, rather than a crisis or pity party. When I say that I’m feeling badly because “such and such”, I’m more likely to get an empathic response — or, if I’m lucky, a hug.
It’s a lot of work. I’ve been at it 30 years and each day is another day to practice.
Rosalind
Julie says
I think one important thing is to address the point you make about overburdening people. Obviously I’m not going to talk to everyone in my life about my latest diagnosis, new symptoms, or daily problems, and I don’t want to overburden those I do talk to. The solution is easy: I check in with these people from time to time. I don’t make a big deal of it, but when I hear myself talking about it yet again, I’ll ask if it’s too much. And I make it clear they can say they need a break without hurting my feelings.
The thing is, I’ve been surprised at how often the response has been “What are you talking about? You hardly complain at all!” We can’t guess at other people’s thoughts and feelings on this, but it’s incredibly important to have a good support network, so before Jane or anyone else walks away, they should check in with people.
The loneliness is horrible and it only makes things worse. There are others of us out here, even though we all forget it from time to time. As Joan said in a different post, we each experience our illness differently. But I wonder if we can help things by being a bit lonely and different together?
Rosalind says
Dear Julie,
You are so right about having the supportive network. My post only started to touch on this subject — there’s so much to say. It’s clear that you’ve learned a lot along the way. I think that it does help to know that you’re not alone in feeling lonely. It’s not a “pity party” . We just all need to feel that we’ re not alone and that there is a community of similar souls. Thanks again for your comment. It added a lot to the conversation.
Diana says
The point Rosalind made- that many people are uncomfortable when they cannot provide advice or solution- is an important one to keep in mind. I realized that my husband was frustrated while I spoke with him about my illness not because I was overburdening him but because he felt helpless. When I explained to him that I don’t expect a solution from him, that being able to talk is a tremendous help, things improved dramatically. And I get a lot of empathetic hugs from him.
With my husband and other people, the most useful tactic has been to ask for what I want or need. People are usually thrilled when they feel they are doing something. I asked my mom, with whom I have always had a bit of a stilted relationship, to call me once a week around 8am. These phone calls have helped both of us. I always make a point to ask about things in others’ lives. I find that many people have “chronic problems” they are grateful to share: my sister is worried about her son’s development, my girlfriend is very unhappy where she is located, my father worries about retirement, my mother-in-law is gripped with constant sadness over the death of her son seven years ago. When listening and sharing go both ways, it makes everything easier and puts everyone at ease. Of course these aren’t party conversations, but they are enough to sustain me.
Rosalind says
Dear Diana, It takes a lot of work to be able to manage our own feelings and behavior –especially when we feel lousy. It’s impressive that you can make the space to pay attention to others -even if you love them. I admire your spirit.
Warmly, Rosalind
Anne says
Hi,
I have to chime in here. I was diagnosed 7 yrs ago with a chronic issue that most kids are diagnosed with, and it is a diagnosis that has a stigma in our society. Fortunately, mine is considered mild, though living with it hardly makes it seem so. Learning about this diagnosis changed how I thought about myself and how I feared others would perceive me. Prior to learning of this diagnosis, I was a long distance runner, spent lots of my training and social time with runners, and considered myself able. After the diagnosis and multiple surgeries, I could no longer run but I valued the friendship of the running friends and continued to present myself as able so they would have no reason to think otherwise. I never talk about my issues, except in the context of what I can do, and do everything possible to deflect attention off of myself. This approach has made a positive impact on how I relate to these people, and, by extension, others.
The dark side of this is that I internalize everything and cannot open up even if someone asks. I just don’t know how to do it and don’t think the listener might be able to deal with it. I guess you can say that I keep up appearances to a fault.
I totally agree with the writer who posted that everyone has a flavor of chronic problems, maybe not health-related, but some other thing that zaps energy and sabotages a positive outlook. We all need to be heard and I bear that in mind when I approach new people or others who might not be mentally prepared to hear about my issues.
Cheers,
Anne
Tara says
I have been living with chronic illness for 14 years, which is a little better than half of my life. Initially, I told everybody. This was because in the beginning, it was hardly chronic, but acute from my perspective. Everything changed very drastically, and overnight. Fortunately, I chose some pretty resiliant companions to talk with, as some of them are still my friends today. Funny, they are the ones who said I never spoke too much about it, and that they admired how I handled my new path in life. It is a tricky thing to maintain relationships with those who knew me as able, they don’t quite understand why I need to turn in before mid-night, or why I don’t view travelling as a respite from it all. So, those are the contacts I learn to read more closely. And I remain grateful for the support team I do have that is willing to weather the storm. Chronic illness implies that the path is long and slow; however, it is a winding road that demands a lot from everyone involved.