When the people in our inner circle don’t understand our suffering, we may feel isolated, frustrated, misunderstood, and painfully, acutely alone as a result. Since we’re all friends here, I’ll just put it frankly: It stinks.
I recently spent some time with a friend who has fibromyalgia, a chronic illness that causes long-term, widespread pain and tenderness throughout the body. She works a full-time corporate job during the week, and on the weekends she works with her husband in their jointly owned photography studio. She was burnt out, stressed, exhausted, symptomatic, and, as she put it, “at the end of her rope.”
But when she tells her husband she needs the weekends to relax and unwind and take care of herself, he accuses her of not being supportive of him and their business. He looks at her, and from the outside, she appears to be fine. She’s not sneezing. She’s not coughing. She’s not profusely sweating. She’s not fainting. She’s not limping. She looks fine.
But she’s not fine. And she needs him to understand. But he doesn’t understand.
Compassion is the Solution
This is just one specific scenario but it illustrates a common conundrum for people living with chronic illness. However, in order for us to communicate our frustration and isolation in a healthy, productive manner, it’s important that we first have compassion for the perspective of the people close to us.
In my friend’s case, her husband has been healthy his entire life, with the exception of a minor cold once every few years. He has had no firsthand experience of living in a body that doesn’t work the way he wants it to. He’s very fortunate. And for this, she needs to have compassion. Yes, compassion.
Of course, you might be saying, “Oh, poor healthy guy! Yeah, I really feel for ya buddy! Geez! As if!” I am reminded of a time in my last relationship when my boyfriend had gotten sick with a stomach virus. He lied in bed for days, watching movies and moping and feeling sorry for himself. I struggled to find my compassion, but all that kept coming up instead was, “Look at you, falling apart with a little stomach virus, you big baby!”
But if we want to be understood, we have to be willing to understand others too. It’s not my friend’s husband’s fault that he hasn’t had the experience of ill health, and therefore it’s not his fault that he has trouble relating to his wife’s struggle and intuiting what she needs.
Engage in Loving Communication
When we focus on compassion, it allows us to put down our feelings of being offended and hurt. It lets us realize the folly of righteously declaring that the other person should get it, and instead it frees us up to focus on communicating clearly and lovingly.
My friend kept saying things like, “I just need him to understand that I’m not feeling well.” But since he couldn’t understand, they were stuck, and frustration was mounting on both sides, creating a serious fissure in their marriage.
I suggested that instead of trying to get him to understand how she feels, it might be more useful to tell him clearly and lovingly what she needs him to do. He may not understand, “I have pain all over my body,” or “I”m too tired to do anything, even though I just got up an hour ago,” but he could understand, “I am unable to work on Saturdays anymore and I need you to find someone else to replace me.”
This is a clear directive. He can work with that. But most importantly, in order for this type of dialogue to occur, it first requires her to take responsibility for identifying what she needs and clearly communicating it, without drama, accusation, or defensiveness.
The Food Poisoning Revelation
Before I was diagnosed with MS, I went through a period of several years after college where I was bedridden for months at a time, a slave to my fatigue and not knowing the cause. My best friend at the time often got angry with me for making and then breaking plans. I tried to explain it to her, but I could barely explain it to myself. I didn’t know what was happening with me.
It reached a climax one day when she was performing in a play in the city and I wasn’t able to go because I was sick. What was this mysterious sickness I kept complaining about, anyway?! I didn’t even have a name for it! She raged at me, at what she thought was my insensitivity and selfishness and laziness. We didn’t speak for months.
Then one day she called me, humbled, apologizing profusely. She had gotten food poisoning from a falafel sandwich she had purchased from a street vendor in the city and she had just spent several days puking and so fatigued she couldn’t get out of bed. She said, “Oh my gosh, Karen, is this what you go through? Is this what it’s like for you?” She said, “I felt so awful these last few days! I get it now. I’m so sorry I didn’t understand.”
Sometimes the only way we can truly understand another’s suffering is when we experience something similar. And even then, everyone’s suffering is different, everyone’s pain is relative.
My friend’s realization made me feel understood and loved by her in a way I never had, and it did heal the wound that had developed between us as a result. But this can’t always be the case, and we certainly don’t wish MS or any other illness on the people we love.
So What Do We Do?
Short of giving all our loved ones food poisoning and hoping they have a revelation, what can we do? The answer is we can have compassion for their experience. We can notice if we feel resentful toward them because they don’t have the same struggles. We can notice if we resent their lack of understanding. And then we can feel compassion for them, for our own pain and isolation, and for the entirety of our very human situation.
And finally, we can ask ourselves what we need and communicate clearly and lovingly how we’d like them to support us. And thank them lovingly and sincerely when they do.