Monday, December 8, 2008

Invisible Illness: A Two-Way Street for Couples

Fibromyalgia, chronic fatigue syndrome, Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), endometriosis, lupus, chronic pain and on and on and on. These invisible illnesses (real illness in a body that looks ok from the outside) force the sufferer to carry an extra burden. In addition to the pain, fatigue, fever, and fear of the illness, these sufferers must continually face insinuations that they are not really sick but just stressed or tired, or even lazy and self-serving.

For couples invisible illness can become a two-way street.

Ruth and Ben

Ruth had always been gutsy. That was one of the qualities Ben loved most about her. She kayaked level four rivers, para-sailed over Ocean Beach, and could hold the revolved half moon yoga pose for as long as she liked. She wore her physicality as if it were a costume that proclaimed her warrior role in the world.

After Ben and Ruth had been married for two years, Ruth started to feel exhausted after walking the dog. Taking out the garbage left her arms aching for hours. Sometimes Ben would come up behind her and knead her neck and shoulders. Lately, if he touched the wrong spot, she yelped -- as if he had poked her with a hot needle. And even though she was sleeping more than usual, she sometimes felt as if the air itself were draining her of all energy and will. After many visits to specialists, Ruth was given the diagnosis of fibromyalgia.

Ben was sympathetic, for three months. He bought Ruth fragrance free bath oils and organic chicken soup. He walked the dog. He sat next to Ruth and massaged her fingers, which were a pain-free zone. And he stayed inside with her, in her new world, a world that had previously known no boundaries and was now tightly circumscribed by pain and exhaustion.

After three months, Ben got restless. He paced the floor as if looking for the path that would lead them back to their old life, the one that should never have been interrupted by this misfortune. His impatience grew with such force that it soon became the lens through which he viewed Ruth. When he tilted the lens in a more benevolent angle, he would say, "You seem more energetic today. Maybe this thing is finally turning around." On more testy days he might say, "Maybe if you did more, you'd feel better." Through any angle of the lens, he was seeing what she was or what he wanted her to be, not what she had become.

Ruth grew more introspective as she struggled to treat herself with compassion and to accept that fibromyalgia was a condition to live with and not an event to medicate. Ben grew agitated and pinwheeled desperately from possibility to hope to disappointment.

Ben couldn't bear to see Ruth's infirmities, and Ruth couldn't tolerate Ben's insistence on activity and optimism. It wasn't only that Ben, finding Ruth physically unaltered, found it hard to assimilate illness into his estimation of her. It was also that Ruth, in working to accept and accommodate to her new limitations, could not abide Ben's buoyancy, nor could she see the fear and sorrow that were underneath it.

They were becoming invisible to each other. This is the toll that invisible illness takes on couples.

The partners' trajectory, once so unequivocal and entwined gets split. Illness inserts itself into some very tender places in the relationship -- into the image partners have of each other, into the activities and routines the relationship depends on, into the kitchen and into the bedroom. Illness gets to make decisions that once belonged to the couple. Illness casts its broad shadow, and the partners are left to try to find each other in the ebbing light. And if the illness itself is an invisible one, its ability to distort the relationship dynamics is even more insidious.

What can a couple in this situation do?

To do nothing will lead to greater invisibility and distance. As with many couple situations the key is hard core, no holds barred, honest communication. The couple needs to develop a new language that incorporates illness rather than avoids it.

Ruth needs to be able to explain to Ben what she is feeling and how it is affecting her. He does not recognize the cues or have the sensors to know what she is experiencing, so she needs to draw him the map of her illness. One useful indicator couples can incorporate into their language is the 1 - 10 scale (where 1 is let's go to Cancun and 10 is shoot me now). In this way, both partners can see the illness and discuss its implications.

But it isn't enough to just understand how big or small the illness is at a given moment. Ruth and Ben need to talk about how to interact -- what questions can they put to each other, how can they state their needs wherever they are on the illness scale, how can they signal the need for attention or for alone time, how can they be together in silence and in inactivity.

And in addition to asking for what they want, they need to explain what they don't want. Ruth needs to be able to say, "I am taking care of myself in the best way I know how. When you tell me to try going for a walk or how well I'm looking, I feel diminished. Like you don't know me and don't appreciate how hard I'm trying."

And then Ruth can take it one step farther and ask for what she needs from Ben - who really does want to help. Ruth can say, "Ben, I know you're worried and want to help. What would really help is if you could acknowledge that you do see both my pain and my efforts; and just ask me how you can help instead of making suggestions."

And Ben needs to let Ruth know how confusing this is for him and that he can't always tell how she is doing and needs her to let him know if this is a good day (or hour) or a bad one. Ben needs to let Ruth know how alone he feels and that he wants her to invite him into her illness. That when he can help her or comfort her, he feels close to her.

And they both need to be able to have their own form of down time - whether that's meditating or watching football. Again the key is communication. Instead of disappearing into the ozone, each needs to tell the other that he/she is taking a break.

Sometimes, just putting explanatory words under the actions, like subtitles, helps the partners get through it together.


themigrainegirl said...

What an intelligent post! Thanks so much for this; I'm glad the How to Cope with Pain blog carnival led me to your site!

fmcomesandgoes said...

Thanks for this post. It will help me show my husband how we can learn to communicate better with one another, and understand each other's reactions.

Barbara K. said...

themigrainegirl and fmcomesandgoes - thanks for comments. I would be interested to hear about any shifts in communication you and our partner experience.

Anonymous said...

Good article that puts into words what many couples face when dealing with either chronic or life threatening illnesses. Some of the article felt like you were talking to, or about, me!

Thanks for some insight, as well as affirmation of what's really going on as my partner and I journey ovarian cancer together.

Julie said...

This is a really great post. It is the life we live and after 4 years of ups and downs with Fibro (and other illnesses) something we are still working on.

Anonymous said...

I have CFS for last two years now. My husband has been diagnosed with RA for 5 years. I've supported him but he refuses to acknowledge I'm sick. I'm a sick tired zombie that's still expected to run the house. He called me lazy and fat. Told me I'm pycho. I just threw his ass out tonight and funny...I few pretty good about it.

Barbara Kivowitz said...

No one has the authority to tell you what you feel and how your illness affects you. Only you can do that. Many who have "invisible illness" and who may not have their illness show outwardly in their body do suffer stigmatization. I hope you continue to find ways to be there for yourself.