Healthy people can fake it.
If your friends enthusiastically invite you to go bowling or play miniature golf or see a Jack Black movie - all three choices second only to a tooth extraction - you can choose to go and fake your way through having a good time. Health gives you an air pocket that allows you to keep breathing while in an unpleasant situation. And you can participate without having to think much or talk much about it. You can chose to go in an instant.
Illness doesn't offer such a cushion. Any invitation has to undergo a cost/benefit analysis. Will the advantages of participation outweigh the repercussions of the effort involved? Is today a good enough day so that you can afford to spend some extra energy points on activity without having to pay too high a cost tomorrow?
What if it's your partner who is doing the inviting? The complications start to trip over themselves.
You know your partner understands your pain or your tiredness better than any one, so he/she wouldn't be asking if it weren't important. You want to be able to give him/her that gift - the gift of one normal day, even one normal hour as a couple. How much could it hurt to go to a movie or eat in a restaurant or drive to the beach? You may even start to convince yourself that you can participate, without cost, in these low key social activities. How much could it hurt? You may force yourself to ignore the signals your body is giving you - that hint of pressure behind your eyes that could signal a migraine or the pain in your lower back that could lead to sciatica or the slight heat of a low grade fever that could leave you depleted. How much could it hurt to take your symptoms with you and sit in a movie theater for a couple of hours?
You wish, more than anything that you could just do it without having to inventory your body and hold this miserable internal debate -- "Can I?" "Why not?" "You know why not?" "But maybe..?" "You know better." "But it will mean so much to him/her." "You and he will both pay for this later." "Why can't I have just one day of normal!!!"
So, no matter what choice you make, you carry the taint of worry along with you. And, given that sneaky mind/body connection, that worry may possibly flip the switch on your stress and release those fight or flight chemicals that can exacerbate the symptoms you are most hoping to ignore.
You may not be able to alter your physical state, but you can alleviate the worry and give your partner a true gift. How? By having the hard conversation.
Chances are, what matters more to your partner than the movie or the restaurant is feeling a connection with you. Your partner so often has to share you with illness, that he/she may really be asking for some eye to eye, heart to heart synching. You can offer him/her this closeness, not by faking it or forcing it, but by telling the truth, with empathy.
Telling the truth with empathy. Sounds simple, but it is actually one of the hardest forms of communication. It requires that you be aware and honest with yourself and at the same time be aware and honest about your partner's experience. To hold both your and your sweetie's condition with truth and compassion. To not retreat into fear or rage or shame. To not pick a fight, distracting you both and shifting the feelings you don't want onto your partner.
What does a "telling the truth with empathy" conversation sound like? (the following dialogue really happened between me and Richard, once upon a pain-filled time)
She: "I love that you are inviting me to go to the movies. That you want us to have fun together and get out of this house. But I am already feeling (fill in the blank: pain, exhaustion, anxiety, etc.) today and am not sure I can make it through a movie."
He: "I do want to get us both out of the house and be distracted for a while from illness. I'm sorry today is already a difficult one for you. Do you think you can try going to a movie? We can always leave if it gets too uncomfortable for you."
She: "I hate to disappoint you. And me. I know how awful it is for you to see me with pain. And I really appreciate that you want to bring some lightness and fun into our day. I wish I felt well enough, but, and this is really hard to admit, I just don't want to be around people or sit still or have to pay attention to a movie for two hours. And I would feel worse if I tried and then had to leave in the middle."
He: "Well I am disappointed. I wish you were willing to try, but I understand that it
just doesn't feel right today. Maybe tomorrow?"She: "Maybe tomorrow. And today, why don't we sit in the back yard and read the paper together."
6 comments:
i just loved this entry, barbara. hope you don't mind that i linked to it from my site -- this is one of the best entries i've read in a long time. i was just nodding my head all the way through. well said.
Thanks Emily. I love your blog writing and appreciate your thoughts about this post
Hi Barbara, I came over via Emily's link. Thanks for writing this perfect post. I related to so many of its points. So well-written. I have chronic daily headache and it steals so much of my life. I often forget about my partner and what it takes from him too. I often feel the urge to write an open letter, so people can know what this is like. But they can't know, until they experience it themselves, what it is like to live your life with a giant monster in the room with you. It does become your primary relationship and everything suffers.
I hope they are reserving seats in heaven for us. Sometimes I feel like I am earning it when I spend day after day faking my way through life with a smile plastered on, just dreaming about "one day of normal".
Great post! I will be back for more visits. Terri
Barbara, I love you post. Thank you for sharing. What I think is so great is that this is, for me, an example of how those conversations should go between me and my spouse. Thank you for the good and healthy example of communication at its best.
Hello Babara,
The only thing about a "Hard Conversation" is that I had to have the conversation with myself.
Yes, as soon as I told my husband I was diagnosed with Primary Progressive Multiple Sclerosis, his answer was he would not take care of me. My fatigue and pain was so profound, I had to retire from my practice. Since 2003, I have traveled the world actively seeking the stem cells needed to heal my broken neurons. Every day I have a hard conversation telling myself to keep on, go forward, and above all, know in my heart that I didn't need my husband's help......even now, when my lungs are weakening, I awake alone in the dark gasping for breath.
SydnyG - thank you for sharing your story. You are so right to remind us that ultimately the hard conversation is with ourselves. I wish you strength and light in your times of darkness.
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