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Chronic Fatigue Syndrome/ME
By Lisa J Copen •
December 19, 2012
Lisa Copen* is founder and director of RestMinistries.com, a nonprofit dedicated to practical and spiritual encouragement of persons around the globe who are coping with chronic illness or pain. Lisa, who lives with rheumatoid arthritis and fibromyalgia, pursues this mission with the help of many dedicated volunteers. This article is reproduced with kind permission from RestMinistries.com.©Rest Ministries, Inc. 2012. All Rights Reserved.
Talking to Our Spouse About Our Illness: How Much is Too Much?
For married couples who have to cope with one or both spouses having a chronic illness, communication is vital. Yes, you should be able to share about your aches and pains, but how much illness talk is too much?
“It feels like I’m laying on thumb tacks,” I tell my husband as he crawls into bed beside me. “But there is nothing there! I feel so bruised.”
“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.
“I feel kind of nauseous too,” I say. “I wonder if I should get something to eat... But then that might upset my stomach. It must be the drugs. I’m sure it will pass.”
As I finish my sentence he’s snoring away.
For many of us, our spouse is our best friend. If our relationship is good, we want to share our feelings with them. Even if our relationship is hurting, we feel that by explaining our pain, they may sympathize and be more loving towards us.
Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real - it’s no longer “all in our head.”
But…for married couples under a great deal of stress, not every emotion one has every moment must be shared.
Despite our spouse’s lack of physical pain, he or she is grieving many losses too.
The loss of watching us lose our abilities, the loss of all of the “couple outings without limits” we were to share over the years, and even the loss of being able to make it all better with a hug. Counselors agree that the top three marriage problems are money, time and physical intimacy.
Chronic illness adds a weighty burden to each of these. For married couples, how can we learn how to “share our burdens” within our marriage, yet also know when to not dish out our burdens one after the other onto our spouse?
Be a team with your spouse
For married couples, it’s you and your spouse “up against” the illness.
You may feel like your spouse is merely a spectator, but make him or her a part of your team fighting the battle of pain. Gently educate your spouse on your illness. Allow his or her presence at doctor’s visits and provide answers to his or her questions about your illness. Acknowledge that your roles may be changing.
Connie Kennemer who lives with multiple sclerosis shares, “I am not as mobile as I used to be and often ask more of my husband. ‘Can you work at home this afternoon? Why do you have to go to another meeting?’ etc. How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”
Have reasonable expectations
We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care.
Or perhaps you take things as they come and put off digging up information. Your spouse may accuse you of being in denial and not caring about your health because you don’t research the illness with the same passion he does.
An excellent book to smooth out your communication is Personality Plus for Couples: Understanding Yourself and the One You Love, by Florence Littauer [5-star rating on Amazon].
Have information available
If your spouse is a book-worm he may want to read books on your condition; perhaps the most effective way to share something is to place sticky notes on pages of a book you’d like him to review, with comments about topics you’d like to discuss. Shares Connie, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”
Find ways to share about embarrassing parts of the illness, but try to keep a bit of romance alive
If your illness is going to cause you to be in the bathroom during 80% of the functions you attend together, it is a good idea for married couples to discuss this before walking out the door to go to the event. Explain how this is part of the disease. Health organizations have brochures on symptoms; you can say, “I’m dealing with some personal matters of this illness right now; I don’t really want to talk about them yet, but they’re in this brochure if you’re wondering.” Avoid sharing every detail if you can.
Find other effective outlets for when you need to vent
“I realized that I banked my frustrations of pain throughout the day and then ‘threw’ them at my husband when he walked through the door,” shares Cheryl, who lives with chronic fatigue syndrome. “I was setting the tone for our entire evening. I felt better getting it off my chest, but he felt worse, and it lasted all night. I could tell he was beginning to dread walking through the door.”
Cheryl began to put aside the last two hours of her day to spend time writing in her journal, praying and doing something she enjoyed that calmed her. “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”
It is easy for married couples to take all their anger out on one another because this is a safe place. But it will do damage to the marriage over time.
Develop interests and hobbies
Too often we talk about our illness because it’s the only thing going on in our lives.
Volunteer to be on a prayer chain, write that book you’ve been meaning to write, or get involved in a scrapbook club and start putting together albums for your grandchildren. You’ll find even you aren’t as interested in talking about your illness when you have more interesting things to share.
So. . . How much is too much when it comes to talking about your disease? It’s different for each person, and for married couples to discuss amongst themselves, but learn to be objective:
• How many times are you bringing up your illness?
• How are you benefiting from talking about it more than necessary? Regardless of whether it is attention, acknowledgment, or understanding… Is there a better, more creative way that you can create intimacy with your spouse, other than just sharing your aches and pains?
• How is it negatively affecting your life or those around you? Send up a prayer before sharing your pain…
[Ed note: For readers living with chronic illness or pain who may appreciate spiritual inspirations, Lisa’s Daily Devotional can provide encouragement and smiles in lonely moments.]
* Lisa Copen, the founder of Rest Ministries, lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why at the Rest Ministries shop.
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| (1 existing comment)
|Posted by: mujuer
Dec 19, 2012
Was this review helpful?
I get Lisa's devotionals daily and they are fantastic for anyone with a Chronic Invisible illness. She had an online conference this last summer and offered it as a flash drive. Very innovative. She offers some great book's as well on her website. One of the book's "But You Look Good" is excellent to give to friends and family members who don't understand.
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