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Posted on 2. June 2011

A Caregivers Guide to Surviving Chronic Illness

By Kris McFalls

When a chronic disease hits, much of
the attention is focused on the person
with the disease. However, family
and friends also are affected. For
caregivers, it can feel as though they
are maneuvering blindly through an
obstacle course full of traps and
landmines, where any wrong move
can result in an explosion of emotions,
leaving everyone feeling spent and helpless.

Having been on the both ends of the spectrum, I can tell you that neither position is enviable. However, with a little dose of humor, good communication and active listening, both caregivers and patients can feel better about their roles. With this in mind, here are a few tips for caregivers:

  1. Don’t say: “How are you feeling today? You look so good.”
    Patients may think: “If you really cared about how I feel, you wouldn’t have asked the question and then told me how to answer it. I work hard to look good because I still want you to look at me and see me - not my disease.”
    And, you thought saying they looked good was such a compliment. You may think saying they look good is a compliment. But, deep down, patients think that you are just trying to be empathetic and show in some small way that you care about them. Alternatives might be: “How is your energy level today?” or “You look great, but how do you feel?” Or, you could simply ask, “How are you feeling today?” and then listen to their answer.

  2. Don’t say: “Let me know if you need anything, and then walk away.”
    You may be serious, but your action causes patients to disbelieve that you are. They may see it as a form of reverse psychology, challenging them to be more independent because, surely, you don’t believe they have an actual disability. If you really want to help, be more specific and pay attention to the obvious. For example, if you know they like to enjoy a nice garden and theirs looks like crap, ask if you can weed the garden.

  3. Don’t be afraid to complain about your own problems.
    Patients with a chronic disease may have diarrhea of the mouth when it comes to talking about their symptoms, or they may be as tightly bound as an old rusty screw. Either way, it’s good for them to feel as though the relationship has some give and take. Talking about your own problems will help some patients realize they are not the only ones with problems. It also will help the tight-lipped patients know whom they can trust when they finally feel safe to open up.

  4. Never start a sentence with: “I understand how you feel.”
    It may have sounded sympathetic in your head, but once out of your mouth, anything you say after that will be interpreted as blah, blah, blah, blah, blah. It’s OK to admit you don’t understand. Honestly, as much as patients don’t want to be experiencing their symptoms, most of them also would not wish their disease on their worst enemy. As one IG Living reader put it: “I don’t want to walk a mile in my shoes; why would I want anyone else to?”

Learning to cope with a chronic disease is a process that takes its toll on everyone involved. Learning to really live life in spite of a chronic disease is an art form that can be achieved with open communication and active listening by both the caregivers and the patients.


Comments (2) -

8:49 AM on Friday, June 03, 2011

This is such a great blog. It is really true that what matters most isn't what you say and do, but how you say it and do it.

When my mother was ill I remember never feeling like I got a break. Then after she passed I remember talking to my family and they asked why I never asked for help. I realized that if you look like you have everything under control, they will just let you keep things under control. However, if you speak up and ask for help or for a break they are more than happy to oblige. Actually, in my case they were all willing but just didn't know where to start.

susan watkins
4:50 AM on Saturday, June 11, 2011

Nicely said.  All so true.  I wish everyone in my family, cite, state, country, world would read this at least once. I know that my family 'get's it' on an intellectual level, but that is never enough to carry you through the really hard part of being 'different'.  It's the worst on a good day, but in order to enjoy it as a good day, one needs to forget their reactions altogether.  If they are not reacting as we see appropriate it's one thing to bring them up to speed, but in general I only burden them with details when it is necessary.  None of them forget that I am sick, but some of them don't really understand how bad it can be until it happens. We can deal with that when it comes. I know that they care and that they love me, but I know that they will never be perfect.  I can handle that now, pretty easily.  It used to bother me, but truly does not anymore.  I am tired of always being the sick one.  When I have good or better days I ignore my disease completely and hide in denial as long as I can.  It is my belief that short term denial is a good thing for us all.  It sounds counter intuitive, but it's not really.  I could not keep my pleasant outlook on life without it.  If I really swam down to the bottom of that barrel, I would not want to live as much as I do.  

Thank you for making me think and thank you for your sensitive observations.  You rock.

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