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Chronic Illness - Chronic Pain Articles Available to Read and Reprint

Why Can't I Make People Understand My Chronic Illness and What I Deal With?

By Lisa Copen


"I don't understand why you won't at least take his phone number; he's a Christian and he specializes in herbal remedies. He could heal you and then you could share his success with everyone and that could be your ministry…"

I was standing in the buffet line at a special dinner for committee members of an international revival that had come to town. Some would go as far to say that those attending this dinner were the who's who of local women in ministry, and I was proud to be among their company. Despite their involvement and leadership in ministry, however, this group of women was healthy-bodied and provided many examples for me to share about how, as a church body, we can increase our awareness and understanding of those who live with chronic conditions.

When one committee member asked why I was appointed as the disabilities coordinator I shared a few words about my ministry. She in turn asked me what drugs I was on because she could tell by my "fat face" (her words, not mine, but a bit too close to the truth) that I was on "something horrible." So when I mentioned the drugs she insisted on sharing with me why I shouldn't be taking them and how she knew someone who knew someone who specialized in herbal remedies and that God had surely brought us together so that I could be cured.

I need not share anymore of this with you. You already know this story, as you have likely lived it yourself. Never doubt that I too am confronted with well-intentioned, even Godly people sharing their cures to all of my ailments. They believe that somewhere I got my lines crossed with God, because any illness ministry who's mission is not solely to heal everyone physically is surely not God-ordained. They believe God's brought them to me to "fix" the ministry and fix me.

"How do I make people understand?" Countless emails and calls all come down to this one question. Is it possible to magically place someone in your shoes and have them walk around in your skin for 24-hours so that s/he can truly understand? Unfortunately, it is not. However, we can choose how we respond to circumstances like the one I have shared above.

By Rest Ministries founder,
Lisa Copen
Just $10

Know Your Values

"For we are his workmanship," (Eph. 2:10). No one on earth is perfect. People will always disappoint us, but God will not. Know what you believe. Know who you are. You are created in the image of Christ. Spending time with God and reading His Word will instill this into your body, mind and soul. This way, when people say things that hurt, you will be able to respond, not react.

No matter how hard you try, pray, believe and respond, people are still going to say things that hurt, even when they mean well. "Remember the time when you said something in total innocence and found out later that your friend had misunderstood exactly what you had said? Or the time that as soon as the words came out of your mouth you regretted it; but rather than call attention to it you let it go, even though you realized it deserved acknowledgement and an apology. People are human. Put your trust in God.

Validate the Feelings of Others

More than anything people want to feel that they matter and that what they have to say matters. Imagine this…

You were diagnosed with lupus two years ago. A long-time friend comes to visit bringing the spouse and kids and insists that you all go to the beach. You realize that this is going to set you back physically for a few days, but you do want to go. You pack as light as possible, bringing a chair, 45-spf sunscreen, an umbrella and plenty of water to drink. Once you get to the beach your friend says, "I don't know why you won't participate. You used to jump right in and play volleyball with us. Now you just want to sit there under your umbrella and you act like you're going to melt in the sun! You've really changed! You're not nearly as much fun as you used to be."

Calmly think about what you're going to say. Respond, don't react. Validate! "You know, you're right when you say I have changed, and I understand why you think that I am not as much fun. I feel that way myself sometimes. It's been a really difficult two-years adjusting to the changes. I love the beach and am glad to be here, but I also have to stay out of the sun. I've really learned to enjoy just reading a book and not having to be involved in everything like I used to be. In some weird way I like parts of this new me that is content in the little things, like seeing your family have such a good time.

Teach When
They Want to Learn

That means you're going to have to answer questions when they feeling like listening, not when you feel like talking - not always easy for a chronically ill person, but a necessary part of helping people learn to understand. Truth be told, if one more person asks me if anyone in my family had rheumatoid arthritis I am going to look them straight in the eye and sadly say, "yes, my grandparents' dog had it back in the 70's."

If a friend wants to learn more about your illness, explain it to him in simple terms. When he starts to give advice or share remedies gently say, "I really appreciate you asking me about my illness, and by telling you, I am trusting that you will respect my treatment choices." If he's relentless, one woman said she jokingly said, "Tell it to the hand," and walked away.

Lighten Up!
Easier said than done, but it is possible. Healthy people don't like to be reminded of the possibility of illness. The fact that you-who lived Trying to make people understand your illness will only frustate you moreyour life pretty decently, prayed, and went to church, now have a devastating illness that is affecting your family, health and finances-is terrifying. If you still want to be his or her friend, the ball is in your court to keep certain parts of the relationship fun. Call them up and ask them to go get a milkshake with you. Join a local book club. Go out for Mexican food and act silly while drinking a virgin margarita. Wear bright, colorful clothes. Send a silly card. When you have a sense of humor about your illness, those around you will lighten up too. Ask your girlfriend to help you go pick out a wig. Bring a joke book to the doctor's office waiting room and read it together.

Be the Kind of Friend
That You Want to Have

So your friend doesn't have an illness? So what? You think you understand every itty bitty thing that she is going through with her child's divorce, her mom's stroke, or her husband's depression? Do you only talk about your problems? Listen! Ask questions that draw her out and show you care about her. "What's the hardest part about getting out of bed in the morning?" "What can I specifically pray about for you?" "What can I do to help you?" Healthy friends don't want to bother us with their troubles or needs; they feel guilty and even embarrassed that they are stressing out over their daughter's new boyfriend or the layoffs at work, when we are wondering if we'll live to see 60. True friends, however, share both the ups and the downs. Don't expect that you get to share all of your downs and s/he only is allowed to share the ups. "Rejoice with those who rejoice; mourn with those who mourn,"
(Romans 12:15).

Speak Clearly
Share your feelings. Say what you mean. Proverbs 25:11 says, "A word aptly spoken is like apples of gold in settings of silver." Be kind, gentle, and respectful. First, pick an appropriate time to talk to a person. Don't have the conversation in front of other people. Don't do it out of anger or frustration.

Secondly, validate the friend and avoid using the word "but." Instead say "and." For example, "I really value your friendship and there are some things that I would like to talk about…" If you say, "but there are some things…" it invalidates the compliment and puts your friend on the defense.

Thirdly, put yourself in his/her shoes. "I know you really care about me and it must be really hard for you to see me in so much pain. I don't know how I would respond if you were hurting and I couldn't do anything to fix it…"

Fourthly, set clear boundaries. Use word pictures to help you communicate." Do you remember how you told me about how you felt when you were young? How your grades were never quite good enough for your parents? How they always made you feel so stupid?" (S/he says "yes.") "Well, my illness affects all areas of my life and I have really jumped in and done all sorts of research on treatments and the good and the bad and the side effects and consequences. I feel like I've made a very educated choice that I can live with for now. I know you have good intentions, but when you tell me about all the stuff that you've read and how I should try something else, it makes me feel like you must think that I am really stupid." (Oh! I never meant it that way!) I know, and I know you just want to help, but I feel hurt and that you must not think I care enough about my health or am bright enough to make my own choices."

Admit You Aren't Perfect
What? Who, us? Yes! Be sure to tell your friends that this whole illness thing is new to you and that you are taking it one day at a time and learning along the way, just like they are in areas of their lives. Tell them that you really care about them and know that they are going through tough times in their own lives too and that you are there to listen. Explain that if you try to start giving advice and forget to listen, for them to call you on it, because you are practicing your listening skills and trying to learn how to be a better friend.

But What If…?

… it doesn't work. Go back to step 1: Know Your Values. People will disappoint you. In fact, you will probably even disappoint a few too in this journey of life. Learn to forgive. Learn to listen. Keep realistic expectations of friends. The very best of friends will listen, bring chicken soup, take your kids for a night, and even cry with you, but only God promises to actually count our tears. "List my tears on your scroll-are they not in your record?" (Psa. 56:8).

Get a free download of 200 ways to reach out to someone who is hurting from Beyond Caseroles: 505 Ways to Encourage a Chronically Ill Friend when you sign up for hopenotes, a monthly ezine. Author of this article, Lisa Copen is also the founder of Rest Ministries and National Invisible Illness Awareness Week.





Don't forget! This article can be reprinted for free or syndicate Lisa's new articles.