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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19 Comments »

  1. I was 32 when I was faced with the reality that inoperable spinal stenosis was more than likely going to cripple me. I raised my family in pain and delayed all treatment until the last child married. In my case I was allergic to standard treatment anyway so my choices were limited. People’s remarks were and continue being the hardest part of the complications that followed. By age 50 I gave in and ordered the power chair as by then I realized that I was doing neither myself or my husband any favors not to use it. Two quotes got me through it all to the point I praise the Lord dailly. They are,”Forgive them Father for they do not know what they say or Do,” and “Blessed is the man/woman that has time to reflect in the noon day sun and nap under the orange tree.” At 64 I still have bad days but I never forget how really blessed I was/am to be chosen. to live a life free of hate has been my blessing as well as my reward. I only share what worked for me and in no means or circumstances suggest that it works for everyone. Each of us must find our own way and in that aspect, we are much healthier than those that still have it to learn. God Bless!

    Comment by catsnjammer64 — May 13, 2010 @ 7:51 pm | Reply

  2. Thank you for writing what is close to your heart, and mine. Just last week I had my disability hearing, (didn’t get an immediate answer and will hopefully hear in the next few weeks)…and I was telling a friend through Facebook chat about the experience. This in the question she asked me…”why do you want to be disabled?” I was quite stunned and had to collect myself before writing a response. All I could say was, “it is not a matter of choice, but is simply what is.” I have never had anyone ask me such a question before and I’ve been quite annoyed since. I’m dealing with enough in life and my fuse is growing shorter and shorter with the ignorant people around me.

    Comment by Mary Phipps — May 19, 2010 @ 4:13 am | Reply

  3. Thank you, Lisa! What a helpful article. I wish I could say to people some of the things I think, rather than only the other way around. I can’t think fast on my feet, or think fast in general (Ha!), so I always think of good comebacks to ignorant comments later. I wish I could say to someone, “you know, I don’t really feel like you’re seeking to understand what I’m going through or that you really care how I feel, it just seems like you want me to listen to YOU and then magically get better.” Proverbs 18:2 – that’s a keeper!

    Comment by Amy — June 24, 2010 @ 9:03 pm | Reply

  4. Hi Lisa,

    I appreciate your ministry and the Sunroom. I joined quite a while ago, but have only visited a few times. I’ve had fibromyalgia since 1995.

    I have a difficult time understanding how the Rest Ministries Sunroom works. I just clicked on a link for new members, hoping to get some understanding, but the page was not available. I did find a thread to read, but it was so depressing. It’s good to have a place though to come to share with others and get feedback that is supportive.

    I recently learned a good tactic to help people understand my “invisible illness.” I was listening to a Christian talk show radio program about this topic and the guest speaker gave an excellent idea. He suggested having notecards on hand that explain my particular illness. That way, they have something they can actually “see.” The notecard has lots of information they can read and hopefully it will stick better in their mind.

    Sorry, I had to just copy and paste, because I don’t know how to create a link that is a Microsoft Word document within this reply. Here is the text of my notecard I made to print on both sides of a 4×6 index card:

    WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

    The many physical and emotional problems associated with FMS are not psychological in origin. This is not an “all in your head” disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
    Fibromyalgia strikes life-long athletes as viciously as it does couch potatoes. It can be disabling and depressing, interfering with even the simplest activities of daily life.

    WHAT YOU SHOULD KNOW ABOUT ME

    1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. Fibromyalgia pain can be localized or all-over body pain. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

    2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping at the mall yesterday, but I can’t go to your wedding shower today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability. I have problems sleeping. Currently my regular sleeping time is between 4 AM and 12 Noon which makes it impossible for me to attend morning or early afternoon appointments or social functions. These are the hours I can sleep, so I’ll take what I can get. Also, it takes a couple hours for me to get moving after I get out of bed.

    3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all. It helps a lot if you write things down for me or give me the time to make a note.

    4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time. I really hate falling down.

    5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, or odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it. I can’t stand excessive heat, humidity, or cold very well. My internal thermostat is broken, and nobody knows how to fix it. Please don’t be offended if I pop in my earplugs, ask for a fan or blanket, or go off somewhere by myself.

    6. My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Inconsiderate comments (even well-meaning ones) or unkind remarks can tip me over the edge. Most of the time, I try to just “suck-it-up” and remind myself you don’t know any better.

    7. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home or at odd-ball hours, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

    8. My weight – Did you know the average fibromyalgia patient gains 50 to 100 pounds after onset? It is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

    9. My need for special accommodation – If I need an ergonomic chair, or permission to be excused from certain tasks at work, or a special mattress topper and pillow, don’t envy me. I need these things to function.

    10. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good hours or even days.

    11. My isolation – I need true friends. I hate asking for help so if I ask, please help me if you can. Believe me, if I could do it myself, I would. I need companionship and understanding and will be more than happy to reciprocate to the best of my abilities. There are a lot of things I can do, but motivating myself to do them is very difficult. I can do more if someone else is simply with me.

    12. My uniqueness – All who suffer from FMS are not alike. That means I may not have all of the problems other FMS patients do. I do have pain above and below the waist and on both sides of my body which has lasted since 1995. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

    I hope that this helps you understand me, but if you still doubt my limitations, your local bookstore, library and the internet have a lot of good information on fibromyalgia. Don’t hesitate to ask me questions. I will answer them the best I know how. Please do not take me and my fibro symptoms lightly. Most likely, you wouldn’t want to spend even a day in my shoes…or my body. I know I am not the only person who is suffering with everyday life, so please let me know if there is anything I can do to help you. All of us are different and have different needs. It would be great if we all could understand and depend on one another.

    I put a little photo of me in the top left corner of the card and the font had to be set at 7.5 points so it all would fit.

    One of the most difficult things about having a chronic illness that is invisible, is that people tend to forget, no matter how many times you tell them. I’m not quite sure these cards really say what I want, so I’ve only given a few to some people I trust and who do understand what I’ve been through better than most. While I was out having dinner with 2 friends and my sister, I told them about the cards and asked them if they’d like to read them and tell me what they thought.

    All three read the whole thing in silence. Then they asked me all kinds of questions that showed they truly were interested and wanted to understand! My sister said, “You really need to give this to Mom.”

    So I think the cards are a good idea. I would like to edit them some way, so the type is not so small and my message is a bit friendlier. They are good to have on hand for when you feel the need to explain or when someone makes a stupid comment. I want to make them better, but not so sure how to do that.

    Comment by Janet Tobias Coverdale — July 4, 2010 @ 10:03 am | Reply

    • Thank you for the article and comments. It is
      helpful to know that others walk a similar path
      as mine. I have friends that understand and that
      helps. My church is supportive. That helps.
      Remembering comments from the past, doesn’t help. That’s why forgiveness is so important.
      I’ve been walking this road a long time, and have lived in more places than I care to remember, since the pain, fatigue, depression
      started. I have heard the line, “If you just
      got right with God, you wouldn’t feel this way.”
      I don’t hear that anymore. But now I think if
      I hear that I need more faith to get healed,
      I will ask, “Where is your faith that I will
      get healed?” based on several Bible passages.
      (like the time friends dropped a paralytic
      through a roof, so Jesus could help him.)
      Thank you for your encouraging words.

      Comment by Eileen Larson — July 22, 2010 @ 4:38 pm | Reply

  5. I suffer from depression and fibromyalgia. I also am going through a divorce where my husband has left me to lead a sinful life of homosexuality. I cannot even START to tell you the kinds of hurtful comments people have told me. People are ignorant of these issues and want to say something that will make THEM feel better, instead of truly listening. If you get too close to my pain, you might catch it <–they must be thinking that.

    Comment by Jessica — July 24, 2010 @ 4:21 am | Reply

  6. There is truth in the walk a day in my shoes saying and people not understanding unless they’ve walked it them. I have MS. I do not look sick aside from what my neighbor calls “the hitch in my gittiup” aka sometimes I limp and use a cane. I had to stop working because of extreme fatigue and I’ve been on the recieving end of if I’d would just let God heal me I’d be able to go back to work. I reject the idea that lack of faith could be preventing a miracle in my life. I am faithful, optimistic and filled with joy despite the ditch my body is in that is the miracle in my life. We are mind, body and spirit and I believe that they balance each other. When one in my case the physical is not working to capacity the others pick up the slack. I am closer to God now than ever before. My soul is full and has picked up that slack and I press on. I think we run into problems when we let our mind meddle where our spirit should be. The mind can play tricks on us making us feel inferior or insecure. Lord knows sometimes we are filled with doubts but even then strive to be commited to Him and trust that He can handle everything that happens to you. Proverbs 3:5 Thank you Lisa for all you do.

    Comment by Lisa Domenic — November 12, 2010 @ 1:47 pm | Reply

  7. I was told that I sit on behind last night by my husband. It is not true at all. I am on disability because of my mental illnesses, and I do not work full time. I do stay busy however. Many people do not understand our illnesses. How do we help them to understand? I am a child of God, and He loves me just the way I am. I think I have to carry my cross, and live in the blessings that I do have. Eileen, I am sorry for what you are going through, it must be painful. You are in my prayers. Michelle.

    Comment by Michelle — December 11, 2010 @ 12:50 pm | Reply

  8. Amy, Thank you for sharing that. It helps me to understand FMS better. God bless you. Michelle.

    Comment by Michelle — December 11, 2010 @ 12:57 pm | Reply

  9. I have a few friends who understand physical and mental pain. It helps to have support. I am learning to rely more on God. I know who I can and cannot talk to about things. I am glad that this is a safe place to do that. Michelle.

    Comment by Michelle Wnek — December 28, 2010 @ 1:33 pm | Reply

  10. Thank you for this article. It has brought me a lot of comfort. My husband is totally supportive and loving for which I am so thankful. However, my church is a different matter. I try to do what I can in the church, but don’t volunteer for “scheduled ministering” as I am very undependable. I never know if I can fullfill obligations that require certain dates. As a result, I find more and more that I am left out of the loop and true friends are far and few. My husband is teaching Tuesday morning groups and Thursday evening prayer meeting, as well as being active in small groups. I’m not sure what I am trying to say. . . I guess I wish I knew how to help others understand that I wish to do more and would if I could. Thank you for “listening.” God bless you for your ministry.

    Comment by Linda — January 19, 2011 @ 11:39 am | Reply

  11. I found a new job that I can handle with my illnesses. It is only five hours a week, but I can continue to work a few hours for my husband and attend my mental health program. My husband wants me to go on a trip with him for ten days. I was given permission to be off for a week, but not two weekends. My husband put the job down, and the time that I will be working. I am proud to be in the working world again with my illnesses, and I don’t want to lose it. He said “I am the man and I say you go for the whole trip, it’s only five hours”. I have choices and rights. I am tired and even afraid to be away so long! I cannot work a full time job, but people don’t understand that.

    Comment by Michelle Wnek — January 30, 2011 @ 1:47 pm | Reply

  12. Hurtful things that CHRISTIAN people say. I also have been told that God is testing me and my faith is not strong enough. All I need to be healed is to get a wheelchair and come back to Church. I understand that they don’t understand and on good days I can take it with grace and a smile. I am dealing with inoperable Liver Disease, chronic Pancreatitis , Diabetes, 5 years of open wound Cellulitis risking losing my leg, many Surgeries and, severe Fibro and Arthritis. I can work with the pain as long as I follow my Doctor’s instructions and keep my medications straight. It takes more patience to deal with these well meaning “friends” or the ones who want for me to entertain them with my strong faith, good attitude and funny jokes. If I am too exhausted, to do that, I am told that I am depressed or giving up on life and what I really need is to get out more. That I am not the same “good old Carolyn” like I used to be. Then they chirp “I hope that you will get well soon”!Forgive them Lord, they know not what they do.

    Comment by Carolyn — February 12, 2011 @ 9:51 pm | Reply

  13. This is very encouraging so many times I have had to say like Jesus “Father, forgive them, for they do not know what they are doing.” People say such hurtful things, although I am sure a lot of the time they don’t mean it! When people ask me why God hasn’t healed me or what I have done wrong for Him not to heal me I always give people the answer that He will heal me it is just that He might do it at some point in this world or He will wait until the New Creation to heal me, but one thing that I can be sure of is that one day I will be dancing with my loving saviour in heaven, pain free forever 😀

    Comment by Suzy — February 16, 2011 @ 11:01 pm | Reply

  14. I know people can try to say the right thing only to put their foot in their mouths, and it is hard to forgive continually. One of the struggles that I have is the silence. My husband really says nothing hurtful, but his continual silence and isolating in his room speaks so loudly to me. My best friend continues to try to get me to shake it off and focus on positive things, which is truly helpful…but her desire is to move on…and now more silence. I was trying to share a new diagnosis of a systemic micoplasma infection and the issues and treatment, she just changed the subject mid-sentence. More silence. So I am trying to deal with the pain of what isn’t being said and forgiving those closest to me for ignoring the elephant in the room…me. I am so happy to have found this web-site…praise God for voices that speak words of love and encouragement.

    Comment by chzngirl — June 10, 2011 @ 4:30 am | Reply

    • Chzngirl I just had to say something here….I have found myself deaing with the ‘silence’ issue too. I have CRPS and Fibro and have found that because this is what I deal with all day everyday it is something that I need to talk about and I have come to realize that as much as my friends and family love me, they just dont know how to respond…often they feel as hopeless and frustrated as I do, it makes them feel inadequate too ( I would imagine this is especially the case with your husband because Im sure he feels responsible to protect you and he cant protect you from the pain. Yes I do have a couple of close friends that cry with me and pray with me but mostly (especially with family) it does come down to Silence. I have sat down and talked with my sons at times when Im near hysteria because of the neverending pain and they have asked, what do you need mom? I finally realized that what I need is someone to distract me, politely. Tell me something new my grandchild did, say something to make me laugh, give me something, anything to get this ever forboding fog of pain out of my brain. They are learning to listen to me, discuss options with me and then gradually change the subject. Works kind of like Lamaze does for childbirth. The pain is real, it is there, but it does not have to consume my every waking thought although it tries to. Sometimes I call my youngest up and just say, I am hurting really bad, so whats going on in your life and he will proceed to tell me about little things or ask me questions about other things in my life and it really does help.

      Comment by Kathy Wire — June 19, 2011 @ 7:10 am | Reply

  15. Thanks so much Joanie.

    Comment by Michelle Wnek — June 17, 2011 @ 9:40 pm | Reply

  16. I thought we were alone in how bad it feels from others who mean well ( I think ) It’s not just in illness that they do this they also do this when one is having financial problems. My wife cant work so I try to exsist on soc sec and am broke most of the time. Even Pastors blame us for not tithing that we are sinners etc etc etc. I am trying to maintain hope, but Oh well, thanks for being there

    Comment by John and Pam — August 15, 2011 @ 6:36 pm | Reply

    • John and Pam, how sad that even pastors are critical of your circumstances, especially when one event could put them into your situation. I am glad you have found a safe place here to share your burdens and know that you will find peers on the same journey. http://whycantimakepeopleunderstand.com may be a helpful resource as well; I wrote it years ago for many people like yourself who found themselves frustrated that others didn’t “get it.” have you been to our main site yet? It is at RestMinistries.com . Warmly, Lisa

      Comment by Rest Ministries — June 12, 2012 @ 2:56 pm | Reply


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