The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for multiple sclerosis

Communicating with Your Spouse About Your Chronic Pain

This article is free to reprint. Keep everything “as is” and include the resource “box” at the end that refers back to Rest Ministries. Thank you! ~Lisa

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Communicating with Your Spouse About Your Chronic Pain

couple-cuddle“I feel like there are thumb tacks in my bed!” I say to my husband as he crawls into the other side of our bed. “I know there is nothing there, but I just feel bruised all over.”

“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.

“Actually, I sort of feel nauseous too,” I share. “It’s probably just the drugs. I wonder if I should eat something or if that would make it worse. I’m sure it will pass if I can just get to sleep.” I look over and he is already starting to snore.

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, our spouse may sympathize and be more loving toward 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.”

Galatians 6:2 tells us “Carry each others burdens, and in this way you will fulfill the law of Christ.” At some point we must carry these burdens to the Lord, as well as a close friend, rather than just count on our spouse to carry the burden of listening about each ache.

Although your spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch someone you love be in pain and not be able to fix it. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couple outings you once took together when you could do physically active events, whether it was skiing, or just taking long walks together on the beach. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.

Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?

Be a team with your spouse

It’s you and your spouse “up against” the illness. Although you may feel like your spouse is merely a spectator, intentionally make him a part of your team fighting the battle of pain, in whatever way he is most comfortable.

Ask your spouse if you can share some information about your illness so he has a better idea of what you are going through, but don’t overwhelm him. If he is willing to attend a few doctors appointments with you, let him, and give him time to ask the doctor his own questions. For example, giving him a brochure may be better than handing him a 250-page book. If he listens to podcasts, find some that would be beneficial for him to listen to. Acknowledge that there may be role or responsibility shifts in the marriage due to the illness. Be open about what you are struggling with and where you need help. For example, if you can no longer scrub that bathroom but, let him know before the grime gets out of hand.

Connie Kennemer lives with multiple sclerosis and she candidly shares that struggle that it can be to find the right balance and word. “I am not as mobile as I used to be and I often ask more of my husband such as ‘Can you work at home this afternoon?’ or ‘Why do you have to go to another meeting?’ 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.”

Be reasonable in your 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. His response to a crisis may appear to be nonchalant on the outside, but it doesn’t mean he is not worried and concerned about you.

On the flip side, maybe you are emotionally overwhelmed the diagnosis and you need to just sit back and take it all in before you start doing research, while your spouse is spending hours at the computer finding out everything he can on the latest treatments, medications, and signing you up for the healing service at church. He may accuse you of being in denial about it all, since you aren’t showing as much passion as he is in finding out more about your illness. An excellent book recommend in helping you understand your communication styles better is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.

Have information about your illness available for when he is ready

If you are having a conversation and you want to explain more about how you are feeling, or details about the illness itself, you may want to have books with sticky notes on the pages you think he’s find most helpful. Or bookmark pages you can read together and then discuss. Connie says, “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.”

Creatively keep him informed about the embarrassing parts of the illness

If your illness is going to cause you to be in the bathroom during eighty percent of the events you attend together, you need to let your spouse know that 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.

Look for other ways to vent besides always dumping on your spouse

“I realized that I held onto all of my frustrations of pain during the day and then ‘threw’ them at my husband as he came in the door,” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for our entire evening and even though I felt better, he felt worse, and it lasted all night. He was beginning to dread coming home at night.”

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.”

Find some ways to get involved in your community or a special hobby

What else do you have going on in your life, other than your illness? It’s easy to be overwhelmed with doctor’s appointments and just maintaining our illness, but it can result in a pretty dull life. Even if you have limited energy, do something you’ve always wanted to do that doesn’t have a deadline. Put together memory albums for your grandchildren, clean out just one drawer, find a new craft or hobby, volunteer to be on a prayer chain. Soon you will find that your illness actually is the last thing you want to talk about when you have had such more interesting events in your day.

Conclusion

So. . . How much is too much? It’s different for each person and each marriage relationship. Learn to look at your situation objectively. How many times are you bringing up your illness? How are you benefiting from talking about it more than necessary? Do you need understanding? Validation? Perhaps you need actual physical help with tasks. Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get this from God instead? How is it negatively affecting your life or those around you?

And then take a moment to really ask yourself “Is there a better, more creative way that I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”

And then when you want to share more about your pain or illness say a prayer first: “Lord, You know I don’t want to burden anyone else, especially when they cannot fix it. I really need a hug from you right now. I know that my spouse cares about me and wants to encourage me, even when he doesn’t always show it the way I want; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.”

For more articles and important support while living with chronic illness or pain visit Rest Ministries so you don’t miss our fresh content and be entered for our monthly giveaway. Lisa Copen is the director of Rest Ministries, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” and founder of National Invisible chronic illness Awareness Week.

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Book Idea for Graduate

Jo Franz is an amazing woman and a dear friend of mine. She is currently in the hospital dealing with multiple sclerosis, but bless her heart, she got an email out about a new book she has for graduates. I haven’t actually read the book yet, but anything she does is exceptional and very encouraging, so I wanted to pass the information along to you from an email she sent to her newsletter subscribers. She did not ask me to post this… I hope it will be a nice surprise for her!

Right now, the book can only be ordered through the postal mail.


jofranz-book

Do you know a graduating high school senior?

Or a college student who could benefit from encouragement during these tough times?

My new 6×6″ book with just 64 pages is the perfect gift!


What Students Are Saying About SOAR Through Anything Life May Bring:
“As a high school senior I found Jo’s book very inspirational. It made me realize how much I am blessed and encouraged me to stay positive in my efforts to choose the right college.”
Allison Knotts, senior in high school, Vancouver, WA

“Jo Franz connects with students, giving them confidence, hope, and a mission in life!” Nathan Peters, B.A. Fine Arts, Chapman University, Orange, CA

“What a great book! I enjoyed and could relate to the real life stories and I know students will be able to do the same. I like how the quotes support the tips.” Heather Englund, recent Graduate of Washington State University, WA

“Jo’s life experiences allow her to connect with students and the challenges they face.” Megan Knotts, senior, Portland State University, OR

“Jo’s determination and charisma shouts from every page. She’s the real deal. You can’t help but be moved to action by her tips!”
Jonathon Siebert, Graduate of Trinity Western University, Vancouver B.C., Canada

“This is a great book for college students, hitting on their concerns perfectly!” Karen Knotts, Junior, Washington State University, WA

“In this book, Jo provides simple yet powerful tools to help change your outlook on life; things you may have previously viewed as burdens are actually opportunities and privileges!” Anna Peters, B.A. Psychology, University of Colorado, Boulder, CO

“This amazing book with incredible true life stories has inspired me to stay strong and have a positive outlook on life. I’m so glad Jo Franz has written it!” Melody Metcalf, freshman, Clark College, Vancouver, WA

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Order NOW for just $11.95 each (FREE shipping & handling)
Just send an email to jo@jofranz.com and type “book” in the Subject Line.

In the email:
Indicate number of books you are ordering.
Who you want them autographed to.
Shipping address.

Make the check out to SOAR and send to:
Jo Franz
102 NE 14th Ct.
Battle Ground, WA 98604-4674

I apologize for the extra work in ordering. The secure shopping cart will be available as soon as I am out of the hospital! Thanks for your patience and orders!

Jo


Note from Lisa: Visit the web site here and be sure to sign up to get her newsletter. It’s always very inspiring!

Oprah and Dr. Oz Talk to Celebrities About “After the Diagnosis”

montel

Tuesday, March 17th Oprah’s show will feature an interview with Montel Williams about living with chronic illness and they will be joined by the well-known physician Dr. Oz. This is not an endorsement of any kind for Oprah or her television show, but I am eager to see what this episode reveals regarding living with illness, and am glad to see an illness that is invisible being represented too. The preview also shows it will feature Scott Hamilton and Fran Drescher.

You can comment on the program now, or after it shows at her forum at Oprah.com (you must first register). If you feel comfortable doing so I encourage you to express what it’s like to live with a chronic illness. It’s no secret I would love for her to be aware of National Invisible Chronic Illness Awareness Week, and for her to see that nearly 1 in 2 live with illness—quietly–not just the celebrities that are willing to speak out.

Here is what I submitted to the forum. It is waiting approval (and I’m not sure it will make it through or not.)

Everyone copes with a chronic illness in the best way he or she knows how at the time. I have lived with rheumatoid arthritis since the age of 24 (16 years now) and like many people who are posting here, I just take one day at a time. Right now I have been in a new “season” of my disease, off Humera since Aug 2008 because I ended up with the flesh-eating bacteria in a wound. Extra prednisone and other meds are keeping me going–but just barely.

As founder of National Invisible Chronic Illness Awareness Week, I am eager to see what this show entails. As a long-time viewer of Oprah through the years, I applaud her efforts to finally talk about the emotional impact of invisible illnesses. (MS can be invisible for years and then can become “more visible” as the disease progresses, liike my RA and many other illnesses.)

Many of us may be frustrated if Montel shares experiences that are different than are own. I see posts that express that Montel is a bit whiny about his experience of “fighting for his life” while living with this disease.

But a couple points: One, he isn’t alone in his experience and will be encouraging many people who feel alone and isolated in their feelings of suicide. According to various studies, depression is 15-20% higher for the chronically ill than for the average person and physical illness or uncontrollable physical pain are major factors in up to 70% of suicides—over 50 % of the people being under 35.

Secondly, I think the honesty and vulnerability he expresses (as seen in the brief preview clip) are vital so that more people can be aware of “the face” of invisible illness. Let’s face it: when people like Montel Williams or Michael J. Fox (who is on the cover of Good Housekeeping this month) speak out, it gives illness a face — and a young one at that! Something those of us under 60 should appreciate.

It’s a nice reminder to healthy people that there are many of us who “look fine” but who are not, and who can legally park in the handicapped parking spot when necessary (even when we emotionally don’t want to!) Over 133 million people live with chronic illness, about 1 in 2 in the USA and about 96% of these diseases are invisible.

I have always liked Dr. Oz and am glad that we can hear from him on the topic of illness, perhaps even some of the emotions behind it. Rather than just sensationalize Montel’s experience, I think it’s vital that the audience hear from a well-respected physician on what you can do after the diagnosis when the illness begins to affect all areas of your life, as well as that of your family.

Thank you for taking the time to let people know about Invisible Illness Week. This year it will be September 14-20, 2009 and we are planning for it right now! We are eager to see how we can spread the word even more effectively this year and you make a huge difference!

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