Talking To Your Spouse About Your Illness: How Much is Too Much?

by Lisa Copen

“It’s as if there are thumb tacks in our bed,” I lament to my husband as he crawls in on the other side of our bed. “Logically I know nothing is there, but my body would argue otherwise.”

“I’m sorry,” he says as sympathetically as he can, but what else can he do?

“I feel a little nauseous tonight too,” I respond. “I wonder if I should eat some crackers or something. . . or if that would just upset my stomach more. It has to be the medications. It will probably pass soon.”

Before I can finish my sentence he is already asleep.

Most of us have a spouse who we would call our dearest friend. If our relationship is a good one, it is natural to want to share what we are experiencing with them. If our relationship is on the bumpy side, we may think that if he could just understand the daily pain we live with a bit better, maybe it would explain our moodiness, and in fact, bring us closer together emotionally.

We don’t want to be a burden and share about every ache and pain we experience. What a boring one-sided conversation that would be! But when we are hurting, we have a desire for those who are closest to us to validate our pain. By talking about what invisible pain feels like, it somehow has the ability to make it real . It’s not just “in our head.”

“Carry each others burdens, and in this way you will fulfill the law of Christ,” says Galatians 6:2. But at some point we need to carry these burdens to the Lord, and even a close friend, rather than just our spouse.

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?

Consider your spouse your partner and the illness the third party

Remember that the “team” is you and your spouse up against the illness. The illness is the third party, not your spouse. Yes, you will often feel that your spouse is the spectator in your life as you go through the ups and downs of your illness, but make him a part of fighting this battle with you in a way that he is most comfortable.

It is okay (and wise) to gently educate your spouse on your illness. Allow him to come to your doctor’s appointments if he wishes, and ask his own questions about your illness, especially when you are first diagnosed. Don’t overwhelm him, expecting him to read all the books you are reading, especially if he never reads. Instead, give him a brochure with the basics or see if there is a podcast he can listen to. Talk opening about some of the responsibilities or roles may change within your marriage due to the illness. Be open about what you think you can and cannot do, for example, maybe you can no longer scrub that tub. Be forthright about them so you can decide as a team how they can still be completed.

Connie Kennemer lives with multiple sclerosis and she shares, “I am not as mobile as I used to be and often ask more of my husband. I may ask him ‘Can you work at home this afternoon?’ Or I have asked, ‘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.”

Reasonable expectations are a must

It’s not uncommon for us to marry someone who has the opposite personality style as we do. You may feel the need to read everything you can get your hands on about your illness and attend all the support group meetings, but your spouse doesn’t respond to your diagnosis in the same way. It’s not because he doesn’t care, he is just responding in a way that is different from your own.

On the other hand, maybe you take things as they come and don’t want to get on the internet and read every detail about the symptoms you may have. Your spouse may wonder why you aren’t more interested in finding out how to best treat (and even cure) this disease. He may go as far as to accuse you of being in denial about your illness. He may want to see you be more passionate about being healed than you are. A wonderful book that will help you smooth out some of your communication 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

Sometimes we can just talk in circles about our pain and illness, never really getting to anything specific or a topic that can help our marriage grow. Perhaps one of the most effective tools to share something is to place sticky notes on pages of a books you’d like him to review with comments about topics you’d like to discuss. You can hand it to him and say, “There is a great example in this book about what we are experiencing right now. Would you be willing to read it and then maybe we can talk about it later?” 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.”

Creatively keep him informed about the embarrassing parts of the illness

Let’s get real. There are some illnesses that may cause you to spend a good portion of an event you attend together, not at the event, but in the bathroom. Let your spouse know this is part of the disease. Health organizations have brochures that list some of the symptoms of the illness, including these kinds of facts. You can say, “I’m dealing with some of the more embarrassing symptoms of this illness right now. I don’t really want to sit around and talk about them, but they are in this brochure in case you are interested in understanding what I am going through.” You don’t have t share details to keep him informed.

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

“I realized that I held in all of my frustrations of pain throughout the day and then when my husband walked through the door I verbally ‘threw’ them him.” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for the rest of the evening. I may have felt better because I got it off of my chest, but he felt worse and it lasted the whole evening. I could tell he was starting to dread walking through the door.”

Thankfully Cheryl realized the damage she was inflicting on her marriage, so she decided to take the last couple of hours each day to write in her journal, spend some time in prayer and do another activity that was relaxing. She shares about the result: “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.”

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.

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?”

When you want to share about your illness, say a little prayer first: “Lord, I bring to you my pain and my emotional needs because of it. You know that I don’t want to burden anyone else with something they can’t fix, but I also want a friendship where I can just be myself and really share what I am experiencing. I really need a hug from you right now. I know how much my spouse cares about me; 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.”

Don’t miss other 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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When Illness Hits a Young Married Couple

By Ashley

My husband, David, and I are in a somewhat unique situation with our invisible chronic illness. Although I am the caregiver, and he is the one with debilitating pain from Psoriatic Arthritis, he is the one that goes to work every day. David is a computer programmer. He sometimes works from home, and his schedule is somewhat flexible. We are blessed that he has a job he can perform even with his disability.

My job is to do everything I possibly can so that going to work is all that David has to do. I call his doctors, pick up prescriptions, duke it out with the insurance company, walk the dog, clean the house, prepare meals according to his dietary needs, get the oil changed, etc. I do it all so that when David gets home at night, he can rest. Dinner is usually ready, and he can lie on the couch watching a movie or playing on his laptop.

I used to get frustrated that David was disabled instead of me. I could be the sick one. I’m home all day anyway. David’s a great husband. He’d take care of me.

I used to think that . . .

Until David finally told me that if I was the sick one, he’d still have to go to work, and then come home and do most of the things I do for him. (Which is exactly what many caregivers have to do.) If I had his arthritis pain, I wouldn’t be able to walk the dog or grocery shop any more. David said it’s really better this way. God knows exactly what he’s doing. I may not always understand or trust God the way I should, but he is sovereign.

Matthew 10:28-31 (NIV) says, “Do not be afraid of those who kill the body but cannot kill the soul. Rather, be afraid of the One who can destroy both soul and body in hell. Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.”

I asked David what advice he would give another couple with chronic illness. His answer is one I can’t top:

“There are days when I’m in terrible pain, and Ashley goes out of her way to help me. Then there are days when I’m in terrible pain, and I go out of my way to help Ashley.”

“A Young Wife” suffers from TMJ Disorder. She loves Diet Coke and spoiling her dog, Henry. In February of 2008, her husband, David, was diagnosed with Psoriatic Arthritis. Having a chronic illnesses as a young married couple has changed their lives. Visit her web site, A Young Wife for more encouragement.

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When Your Spouse Doesn’t Believe You are Ill

The doctor couldn’t find anything wrong with her, despite her complaints about pain and extreme fatigue. He left the room and her husband came back a few minutes later.

Hi, Honey,” she replied to her spouse, as she carefully reached out for his hand. But he didn’t reach out to take her outstretched hand; he just let it sit there empty on the scratchy hospital blanket. He looked at her with tired eyes, full of frustration.

“The doctor said that there is nothing wrong,” he said. “I think maybe you’ve just been making all of this up the last year.”

She was heartbroken and pulled her hand back. He was her lifeline, the one thing that was getting her through all of this. He was the only person who she trusted would always believe her, understand and offer love and sympathy. And now he thought she’d been deceptive, lying about her pain.

Unfortunately, this scenario is a true story… and all too familiar for many couples. Illness can have a devastating effect on relationships, especially when it is invisible, difficult to diagnose, and hard to even understand. So what’s the answer if your spouse doubts that you have an illness? While there are no easy answers or tips that will guarantee results, here are a few ideas to make the journey easier.

1. Pray. Rather than praying as a last resort, start praying first. Ask God to give your spouse wisdom and discernment, especially regarding your illness. Pray that God will send people into your spouse’s life that can be a godly influence, such as other spouses of people with illness. Pray for a diagnosis so that you can have the benefit of the medical world on your side.
2. Allow your spouse some time to see that the illness is real. Don’t expect him/her to be convinced by what you say. Let him/her see how you are over a period of time.
3. Surround yourself with supportive people who do understand that you have an illness and it’s implications. Join a support group or a womens bible study. Ask for prayer for your marriage. Let others encourage you and stand by you when you need the emotional support. See a pastor if you need to talk to someone about your marriage and the effect his or her doubts are having on the relationship.
4. Refrain from trying to do more than you should physically. Every time you do too much you are sending signals that you are able to do more, even though only you will know how much you will pay for it later in pain.
5. Do the research on your illness or symptoms and continue to fight for a diagnosis. If you already know what your illness is, get as much information on it as possible and keep well-informed.
6. Invite your spouse to accompany you to a support group meeting, a workshop or conference on your illness. Explain to him that you just want to find out more information about this illness, and that he might find it interesting.

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Reprinted from …And He Will Give You Rest, Volume II, Issue 9. © *Now called HopeKeepers

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