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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How to Cope With Unsolicited Advice When You Have an Invisible Chronic Illness

Unsolicited advice is so common in cases of invisible illness, you could practically consider it another symptom! If you have invisible illness or any illness that people don’t understand, you’re going to get unsolicited advice.

Receiving unsolicited advice doesn’t say anything bad about you. Even if far more people try to give you advice than did so when you were well, it doesn’t mean you are doing a bad job or making worse choices now. It just means you’re in a less well-understood life situation.

Perhaps because your life seems hard, people feel compelled to give you helpful suggestions. Or perhaps they are unaware of the trade-offs you might be making, such as:

• Benefiting from exercise versus damaging your body from exercise.
• Trying alternative treatments that might not work versus missing out on alternative treatments that others seem to have found helpful.
• Adhering to your treatment regimen versus letting lose and having fun.

It takes so much skill to survive with a life-altering chronic illness that it’s not much of an overstatement to say that outsiders without the illness have nothing to offer.

People would not offer advice to a heart patient about how to deal with her condition, since they see it as a real condition and would not want to get between the patient and her doctor. But since invisible illness is not always recognized as serious or real illness, outsiders might think they are qualified to offer advice.

I will take advice from people with my condition; but advice from people without experience with my condition has usually made me feel worse, whether because it was bad advice for me (such as “Get out and run more”) or because it implied that I was making poor choices in my life (such as, “Maybe you’re tired because you don’t get out enough”).

But people offer advice nonetheless.

Here’s how I interpret it:

1) First question: Does this person offering the advice understand my situation?

If not, then there is no need to take the advice seriously. Just smile and nod. This holds in general, even for advice about things other than illness.

2) Has anyone with my condition (or anyone who intimately understands my illness and my personal situation) offered me this same advice?

If not, I can discard it.

If multiple people are aware of your situation; and if no one who knows your situation is telling you that this is a problem; then it’s probably not a problem.

How to Give a Good Response to Unsolicited Advice:

A) Commit to being non-defensive. You don’t need to prove yourself or to explain yourself. In fact, you don’t even need to respond at all.

A response to written advice could be as simple as “Thanks for your concern” or “Interesting.”

The less explanation in your response, the better. If you try to explain the situation, the person might try to argue with some of your points, because they might not understand the context or the knowledge underlying why these points are true.

B) If you decide to respond, first express thanks for how the person went out of her way to try to help you. Focus on your gratitude that they care about you and went out of their way to try to help. Try to see their comments as good-will attempts to help you, rather than indictments of your choices.

C) If you have already encountered or considered what the person is bringing to your attention, say firmly, I’m already aware of what you are mentioning, and given that this issue has been a major part of my life for a long time, it’s going to be hard to tell me anything I don’t know or haven’t considered (unless you yourself have the same illness).

Implied: I am not interested in further suggestions. Also implied: I am the expert about my own situation.

D) To help the person to feel like they helped you (in which case they are less likely to pester you in the future), you could add, if they helped you to think of anything to try,

“But now that you mention it, I have been thinking about trying ___, or I’ve been meaning to do ___, etc.”

E) This last part is just for fun, probably not to actually say to anyone unless they were being particularly egregious:

“Could I offer you some unsolicited advice back?

“Have you thought about how people might feel when you tell relative strangers that you think you know better than they do what they should be doing?

“I am concerned for you. I think this strategy might hurt you in life.

“I encourage you to be more cautious about offering unsolicited advice; and if you do say something, I think you should learn to say it in a nonviolent, sensitive manner.”

How to give unsolicited advice:

1) Don’t.

2) If you must, first ask how well you know the person’s situation. Also ask how well you know the topic about which you would give unsolicited advice. If your answer to at least one of these is not “extremely well,” go back to (1).

3) Use Nonviolent Communication (NVC). Use “I” statements and stick to saying things about yourself and your own feelings and situation.

4) Most importantly, don’t assume you are right! Even if you are sure that you are right and the person is wrong, there could be factors you don’t know about, or your information might be wrong. Withhold judgment!

5) Express confidence in the person’s judgment: Before staying anything, start by establishing, “I am sure you know what you’re doing. I respect your judgment. You’ve probably already thought through this.”

Offering advice without establishing your respect for their judgment is tantamount to saying, “I think your judgment is so bad that I am assuming you are in the wrong even when I hardly know what is going on.”

5) Portray the issue as a concern that you are having, involving up with your own emotions and experience (since that is what unsolicited advice is anyway).

“I am just having my own issue, where for my own reasons, I get worried about ___ happening.”

“In my limited experience, I thought that __ was true. Perhaps you know more about this than I do.”

“I know that in my own experience, which is a completely different case from yours, __ works for me. But your case must be different from mine. I’d be interested in hearing how it’s different so I can learn more.”

6) Use plenty of qualifiers to make it clear that the other person is an expert in their own situation, and if you are questioning them about it, it is as much for your own education as for their potential education.

Since they are the experts on their own situation, they are more likely to have something to tell you than for you to have something to tell them.

Andrea Runyan is a writer in Boston, Massachusetts. She studied math and biology at Stanford University, graduating with a Bachelor of Science in Mathematics and at Stanford, she wrote an opinion column for four editions of The Stanford Daily. She is currently writing a book about communicating with friends and family about chronic or invisible illness. See her blog at Andrea Runyan

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