Chronic Illness Articles

May 13, 2010

Chronic Illness and the Hurtful Things People Say

by Lisa Copen

We may find ourselves surprised to discover just how much we are the on the minds of loved ones who are around us. They may actually be concerned about us more than we admit in regard to our illness. So when they comment about our illness in a way that stings we are left wondering about their intentions.

We can try our hardest to not let the hurt feelings we experience bother us. We see that we need to acknowledge their heart’s concern.

There are moments, the “wounds from a friend can be trusted”, as it says in Proverbs 27:6. This is because the comments are completely communicated out of ignorance. The people we are counting on to be understanding are struggling to say whatever it is that can communicate their care. Their comments, however, just come out in a way that at times results in being interpreted all wrong.

It was 1993 when I received a diagnosis of rheumatoid arthritis my life changed rapidly. Those individuals at my church body and people at work felt no reluctance in telling me their their thoughts about my diagnosis of rheumatoid arthritis –which I was without a doubt not old enough to have–in their ‘expert’ opinion.

As a 24-year-old young woman, living over a thousand miles away from the place I grew up, the decisions I was forced into making about the treatment choices felt serious and overwhelming. I meticulously poured through brochures and paperwork researching medications, therapies and alternative treatments.

I went out of my way to see specialized doctors, for example rheumatologists. I compared different drugs and their instant side effects, with the long-term results of choosing not to use certain medication.

The mixed up advice from people who had never even heard of my chronic condition felt like a personal attack on my level of common sense. I know that may sound as though I was too sensitive, however. . . that is how it felt. My emotional side thought “The nerve!’

I must admit, of those who casually shared ignorant statements, it is those that had their opinions about my genuineness of my faith that hurt the most.

Have you experienced what Proverbs 18:2 says is a friend that “finds no pleasure in understanding but delights in airing his own opinions”?

When I was first diagnosed with rheumatoid arthritis, seeking examples from others who had traveled this unexpected road, I researched the inspiring autobiographies of Christians who who had endured physically suffering, Joni Eareckson Tada and Dave Dravecky.

They have, and continue to hear, the same sort of comments and even insults, that I was told. I gripped onto the oath that the Lord was the only one who really saw my heart.

If strangers were able to share these heroes in the ministry of suffering regarding how they didn’t have enough faith to be totally be given the gift of healing, what made me believe that I was exempt from similar criticisms and skepticism? If you find yourself wondering if something is not right with you due to the fact that people tell you don’t have enough faith to be healed, guess what? You are not alone.

In addition, I’ve heard some rather derogatory comments, and it’s always a struggle to simply smile and say, “I appreciate your concern, but I don’t necessarily agree.”

Many times it feels as though everyone who is well, desires me to have a ministry for those who are healed or a ministry that tries to “get people healed” by demanding a certain formula that they think God uses.

Personally, I just don’t have a passion for a ministry that focuses solely on healing. Many of those already are available. And I would be thrilled to wake up tomorrow and find I was healed, but the zeal that God has called my heart to is a ministry where people are today– usually, still sick. I want to meet each individual wherever they are before they have experienced a healing. I want to be a part of in the ministry that stands by them if healing doesn’t comes on this side of heaven.

Through the organization I began in 1996, Rest Ministries, for the chronically ill I have been honored to have the chance to speak and exhibit to many audiences, including pastors and chaplains, as well as those coping with invisible disabilities. Always, however, I am vulnerable to being told, “If you had more faith you would get healed.”

Frequently people glance over the table of our resources and books and then say, “This is wonderful, but you should try ‘fill-in-the-blank-alternative-treatment-here,’ and then you would be healed, and then that could be your more helpful ministry!”

In some strange way, though I still to get upset with the limitations and a generation of my disease, I am just beginning to understand the Bible verse 1 Peter 4:13. It speaks of considering it “pure joy to suffer for Christ.” If this means that I will have to “walk the walk” (or someday wheel?), then I will do so.

And I am not alone in this regard. You may find many people with chronic visible and invisible disabilities confess that though they are not especially “joyful” about their circumstances they have discovered that life is more meaningful, even though bittersweet, due to the suffering they have experienced.

Yes. . . I hate pain! And I get tired of it. God does give us grace and endurance to get through another 24 hours. He also provided the Israelites manna so they could live one more day, solely depending on Him. I confess, like the Israelites, I have my moments I want to complain, “L-o-o-r-d, I’m tired of the manna!”

One will find, however, that as he grows closer to God the remarks people say will become much less important and they will slide off of us much easier than we ever imagine. Although there are days where it feels like people are purposely trying to say things that will bring us emotional pain, most often the pain they cause is not even known to them. Grow close to the Father and your faith in man will grow less and the emotions will not be so painful.

Does it feel like no one understands what you are going through? Author, Lisa Copen shares in her book “Why Can’t I Make People Understand?” more ways to get past the need for friends to empathize. Discover it today so your life can be overflow with joy, not frustration.

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October 11, 2009

Chronic Illness: How Much Do You Share with Your Spouse?

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, we have a deep friendship with our spouse. If we share a good relationship we want to share our deepest thoughts that are running through our brain. And even if our relationship isn’t as good as it once was, we may feel that by explaining a bit about the pain that we are experiencing, our spouse may actually understand our moodiness better and be a bit more loving.

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.”

In the Bible we are told “Carry each others burdens, and in this way you will fulfill the law of Christ” (Galatians 6:2). Our spouse can play an important role in helping us cope with our illness by carrying some of the burden, but it’s wrong of us to assume that our spouse should be fully responsible for carrying it. We need to take our burden to the Lord and talk to Him about it, as well as find a close friend we can confide in.

Your spouse may not be in physical pain but he or she is still grieving many losses that we need to acknowledge can be just as emotional as our losses. Perhaps his coping with the loss of watching you lose your abilities to do things you love; he misses the fun things you used to do together as a couple that are now too physically demanding for you to do; he may be frustrated that even his hugs can be painful for you! Counselors have agreed that they typically see the same top three problems in marriages: money, time and physical intimacy.

Is your marriage suffering from changes in all three areas? Illness can add a burden to each of these. How can we learn how to “share our burdens” in our marriage relationship, and yet also realize how to set reasonable limitations on our expectations of what our spouse should handle?

Be a team with your spouse

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.

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 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.”

Reasonable expectations are a must

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 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 open to reading about it

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.”

Find ways to share about embarrassing parts of the illness

There are some parts of illness that are just downright embarrassing. For example, if you attend an event with your spouse, you may end up in the bathroom for eighty percent of the show. You need to let your spouse know this is part of the disease. But if you don’t want to talk about all those details it’s okay. He probably doesn’t really want to hear about them either. Most health organizations have brochures that list the symptoms of the disease. You can hand him one of these and say something like, “I’m trying to cope with some of the more personal matters of this disease right now, and I don’t really want to sit around and discuss them, but I also want you to be aware of them. This brochure explains them in case you are interested.”

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

“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.”

To rectify this Cheryl started to put aside the last couple of hours each day before her spouse came home write in her journal, pray or do something she enjoyed that was calming. “Writing in my journal gave me the chance to express my frustrations; prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Get involved in some new hobbies

How do you spend your time? A lot of time we may be talking about our illness because we don’t have much more going on in our lives other than trips to the doctors or to the lab. Get involved in something else, even if it’s just a couple hours a week. For example, volunteer to be on a prayer chain, start reading through the classic books you’ve always wanted to read, put together photo albums for your grandchildren. You will soon discover that even you aren’t that interested in talking about your illness when you have much more exciting things to share about.

Conclusion

So, the real question is how much is too much! There is no perfect answer, because it’s different for each person and each marriage. Practice being objective. How often are you bringing up your illness? How do you benefit from talking about it more often than necessary? Do you need validation? Understanding? Actual physical help with tasks? It’s not wrong to admit that maybe there are days we really do just want the attention from our spouse and this seems to be the only way to get it! How can we get some of these needs filled by God instead of our spouse? How is it negatively impacting your life, or those around you, by discussing it all the time?

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 about your pain, send up a prayer to the Lord beforehand: “Lord, I don’t want to burden anyone else with something they can’t fix, and 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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