When was the last time you told a friend with an illness, “I care about you”? Everyone needs to hear the words, “I don’t know what to say but I care about you.”
“I care about you.” We don’t hear it very often, do we? Those of us who are living with chronic illness can occasionally feel like no one really cares about us. Yes, that can sound trite and a little self-serving, but living in chronic pain every day can become lonely.
For example, our life may consist of spending the day on the phone trying to figure out what new medications we are not allergic to that the insurance will cover now that the co-payment has increased on the one we like best. Or we may be trying to read about how to fix the ice maker because it stopped making ice cubes for the ice bag we desperately need for our pain. Everyone around us seems to be going through the normal activities of life, like what to make for dinner or planning vacation with loved ones.
Although there is no shortage of people who send us newspaper clippings about the latest cure for our disease or fresh advice of “you should try. . . .”, the words, “I care about you. I am here,” are less common than most people would believe.
These are precious words we don’t hear every day:
“I don’t know what to say. I wish I could fix it all and take away your pain. I don’t know what you would like me to say, and I am so afraid of saying the wrong thing. But know this: I care about you. Truly. I care about you.“
If you have a friend with a chronic illness condition and you tend to avoid bringing up his or her illness because you are afraid of saying the wrong thing, take a moment and just say, “Hey, I know we don’t talk about all the stuff you deal with very often, but I don’t want there to ever be any doubt about this: I care about you. I am here if you need anything.”
You never know how that will add trust and joy to the relationship.
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Have you ever wanted to encourage someone with a chronic illness, but it seems like you never know what to say? Moreover, when you finally think of something you just know will make them smile, do they snap back at you with frustration?
Well, you are not alone. Because we truly want to help our friend or family member with a chronic condition, we often try to think of just the right words we can say to make all of the pain vanish from their life. If we can just “fix it” then we will not have to see them suffer anymore. Unfortunately, when we do try to come up with a quick answer, we often end up saying something that seems to irritate or offend our loved one.
It is difficult to understand why they got upset, because to us what we had to say should have been helpful. Nonetheless, if we could simply jump into the life of our loved one, then we would see why our well-meaning comments were not so well-received. Often, it is our intention to help them “see the bright side” of their situation, so they can realize it is “not that bad.” The problem is that we have then failed to acknowledge their battle is very real and we have gone on to minimize its impact.
Sometimes we even try to point out another person who is “worse off” or try to relate by saying, “Ya, I am tired too.” Often, we disregard their limitations by attempting to talk them into doing what they know they cannot or should not do. Because we forget how anguishing is it to be ill and laid up, sometimes we even try to tell them “how lucky” they are to not have to work or clean their house.
What’s more, we cannot resist acting as if solving the problem is so simple when we exclaim, “why can’t you just take this or do that?” Likewise, we want so badly for them to be feeling better, that we refuse to hear the truth and do not allow them to be open and honest with us about what they are going through.
Besides not knowing what to say, we often do not know what to do. We often wish we could do something to help, but do not even know where to start. Our own lives can be so overwhelming and busy that we could never fathom having the time to run arrands, do chores and help clean someone else’s home too!
Nevertheless, what we fail to realize is that what might seem like an insignificant effort to us, may save our loved one an entire day or even week’s worth of energy. For example, just picking up a few things at the store while we are already there and taking out the trash when we drop them off does not take much of our time, but it can make a world of difference to them!.
In all, we can never fully comprehend what it is like to have a chronic condition, with all of the loss and pain it poses. Yet, we know we would not want to feel this way ourselves, so surely we can see what courage our loved one displays! We can even try to remember what it is like to have to put our lives on hold for even just a few days and tell our loved ones how amazed we are at their strength and perseverance!
People with chronic illness/pain would never choose to willingly give up activities they used to enjoy! In fact, they would do just about anything to get their lives back! Therefore, we can rest assured, knowing they will keep fighting, researching and pursuing ways to regain their lives or at least prevent further progression of the disease.
Yes, accepting what is happening to a loved one means having to deal with all of its pain, mourning and changes, but do not sell yourself short! After all, if they are forced to live with it, we can certainly choose to live next to it!
This article by Sherri L. Connell, contains excerpts from the booklet,“But You LOOK Good: A Guide to Understanding and Encouraging People with Chronic, Debilitating Illness and Pain!” Copyright ©1997, Revised 2002, The Invisible Disabilities Advocate
This booklet explains how a person can be damaged by an illness and/or injury on the inside, but still “look fine” to others on the outside. It gives detailed suggestions of “what not to say” and explanations as to why. In addition, the booklet provides many examples of “what to say” to be an encouragement and offers practical “ways to help.”
For ordering information and to read more articles written by Sherri, visit The Invisible Disabilities Advocate at: www.InvisibleDisabilities.com Please contact IDA for permission to distribute or publish this article.
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You can’t be that sick. (laugh) I think you are faking illness because you never feel well when we plan something I want to do!
By Lisa Copen
If you live with an invisible illness, you may find the emotions of coping with people’s doubts and insinuations that you are faking illness harder to manage than the disease itself.
Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment. But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Many loved ones of those with chronic illness truly do believe they are faking illness in for some agenda. Their skepticism can last a lifetime and damage our self-worth and many relationships.
So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? If they thinking you are faking illness do you still even want to be a friend of him or her? You need to make that choice. It’s personal decision and there is no answer for everyone. But here are four steps to change your actions and attitudes:
1. Go with it.
Your life feels very serious right now, but don’t take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness and discover you are not faking illness, is for him to observe you and your typical activities.
Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see it.
But don’t let the need to prove your illness define your friendship. Decide if this friendship is worth the investment of time to you.
2. Grow with it.
Use this as an opportunity to reflect on how you perceive other people and what you assume about their abilities. For example, when you’re standing in line at the store and feeling wiped out, it is easy to assume “No one else knows how hard this is for me!” When you see someone expectantly park in the blue spot is for your first instinct to think she is faking illness?
Surprisingly, nearly 1 in two people live with an illness and about 96% of the painful diseases are invisible. So the odds are that there are people who do actually understand how you feel. Also, think about what situations your friends are experiencing that you don’t really understand. Is a friend suffering from a spouse who has had an affair? Do they have a parent who has Alzheimer’s? Or have they recently lost a job? All of these events dramatically change one’s life and your friends can use your empathy and understanding.
3. Get over it.
Save yourself a lot of grief and don’t obsess over it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind about you faking illness; you can only control your own behavior, so make certain you have conversations that you won’t regret.
4. Get on with it.
No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, and really does believe you are faking illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.
The odds are that in time your friend will eventually have his own health crisis, and have some level of understanding about what you have faced on a daily basis. He may even turn to you for advice. Be supportive and encouraging. Don’t say “I told you so.”
Go with it. Grow with it. Get over it. Get on with it.
Is it possible to have relationships with people who don’t understand the seriousness of your illness? Yes. But what about when they act as though you are faking illness or trying to get away with something? You can either choose to end the friendship or accept him for what he is able to give. Know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.
Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.
She is currently writing a book for Christian moms who live with chronic illness. If you are interested in sharing your stories, feedback and confessions for the book, visit her Facebook page at http://MomWithIllness.com .
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