Chronic Relationships.

It can be a very valuable practice to put yourself in your partners’ or loved ones’ shoes and imagine what you are like to live with – then ask yourself whether you could live with you. Think of all your quirks, obsessions, desires, demands, patterns, projections, emotions, problems, past experiences, and expectations. How you deal (or don’t) with family, how you typically argue, what’s important to you, what goals you have, and even what your particular love language is.

Think of things ranging from the ways you like the dishes done, dinner cooked, house cleaned, laundry folded, and checkbook balanced all the way to how you watch TV and whether you always have to hold the remote. Think of all the bits o’crazy that might belong to you, and that your partner experiences from you, and then think about whether you could live with it. I’ve done this exercise before, and it’s not always an easy one to face.

No matter how good I think I am at relating with others, dealing with situations, being open to things, and communicating clearly, there is always room for improvement. Improvement only comes, though, when I am willing to look at myself honestly and sometimes that can be a hard thing for me to find the time and energy to do. The benefits of doing so, however, are many, including better relationships, increased communication, and personal growth.

I imagine this kind of honesty and self-regard might also be helpful for those of us with a chronic illness who are partnered, and even with our friends. Chronic pain and illness can be so consuming of energy and awareness that it can sometimes be difficult to monitor our own behaviors toward others, or how we come across to our loved ones. And sometimes, the feeling of unfair suffering is so strong that we just don’t care! But if we were to give it a little thought, my guess is that it isn’t easy much easier to be partnered to, or friends with, chronic illness than it is to suffer from it.

Try imagining that your loved ones are the one with the illness; how do you imagine you might feel or react? My husband suffers from a chronic condition – not quite as severe as mine – and I can attest to the fact that I get frustrated when he doesn’t take care of himself as well as I expect he should. It’s probably the same way he feels about me when I don’t manage my physical self as well as I could. It could also help give him a little insight into my experiences.

Speaking for myself, I freely admit that, although I often try to genuinely imagine what it might be like to be at the effect of me, and make behavioral changes accordingly (or not – I’m not perfect) – I don’t always make an effort to imagine what it’s like to live next to me and my chronic illness. It’s in my own body and I don’t always get along with it very well; it can’t be a picnic for my loved ones to do so. I do know that I take on too much, I sometimes have trouble slowing down and knowing my limits, and I’m very bad at asking for help (In my defense, I am better than I used to be.)

I imagine it can be very frustrating for my husband when he’s trying to help me and I’m too busy proving I’m just fine to let him, but I get frustrated when I feel like he’s trying to do too much for me, or restrict me from what I want to do. I treasure my independence above all and I want to be able to do things for myself as long as humanly possible, even if it might be a little hard on me, physically. I’ve explained that to him, but I know it’s hard for him to grasp: a person who hasn’t felt the helplessness of chronic illness won’t be able to fully understand fully what it might be like to lose the ability to care for yourself.

Quite often, people offer me chairs to sit, or their arms to carry stuff, and I cheerfully say I’m fine doing what I’m doing, without realizing that it might be better for them if I accepted their offers. I don’t always think about the fact that it might make the people with me uncomfortable when I tire myself out or start limping heavily, or that they might be trying to get something done faster, or are just trying to help. I can judge my physical self and limitations to a hair, but then I’m inside my body and they’re not; it must be hard to be able to judge how tired I am only from my physical signals and guesswork. Those who know me best know the signs but it’s probably still hard to know when to step in.

I know that I carry with me fears about how the future will look, that the illness will return, that the disabling will become worse and worse until I am completely immobile, or that some other infection or illness will strike. I am so used to these thoughts that I barely notice them – they are just part of living with the disease. But what must it be like to be on the outside? Although I don’t often think about it, I’m sure our loved ones have their own fears about what the future will look like and how they will manage it.

It has taken me some time to admit that, in addition to taking an honest look at who I am in my relationship in general and whether I could improve, I can benefit from the same when it comes to the me-with-chronic-illness, in a relationship. Being more open about my chronic illness, including what I’m feeling, how I’m feeling, my fears and concerns, and, especially, acknowledging my limitations and irritating reluctance to accept help, not only helps my loved one – it also helps me.

Perhaps it just boils down to the same thing it always – annoyingly – seems to boil down to; a little bit of self-awareness with a dash of improved communication. Being more open about our experiences with our chronic conditions might be of value to our loved ones. We get frustrated that people don’t “get” what it’s like to have a chronic illness, but if we want them to understand what it is like to be us, maybe we could spend a little time imagining what it is like to be them.

We had little to no choice in our illnesses; they came upon us and we just had to deal. However, we have insider knowledge and have become accustomed to how it all works, more or less. Our loved ones are people who have chosen to live with our illnesses; unless they have their own chronic condition, they don’t have that same insider information and awareness. Recognizing this might help us give them a break, so that everyone is a little easier to live with.


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