What to Say, What Not to Say and How to Help People Living with Illness and Pain

Ask anyone living with illness or pain and they will probably be eager to share what many people have said to them over the years that they didn’t feel was very encouraging. In fact, many will tell you that they were very hurt by something someone said.

It is true, that some people in this world may say something that is intentionally judgmental or negative. Nonetheless, we believe that in many cases, friends and family really do want to be supportive, but simply don’t know how.

Some people choose to ignore the issue or person; some toss out platitudes like simple fix-its and others share what they feel is the right thing to say with an expectation that it will be met with appreciation for their insight. However, loved ones often they find themselves perplexed or even angry when instead of being elated by the comment, their friend or family member is clearly frustrated by what was said. Sadly, these encounters can lead to the breaking down of communication and the relationship as a whole.

IDA Founder and President, Wayne Connell and his wife, Sherri, know all too well how relationships can suffer or even end. Wayne believes that loved ones need to learn what he calls, “The Language of Invisible Disabilities.” People can learn these communication and support skills by learning what to say and what not to say and why.

When they can discover why a certain comment or suggestion is not well received, they can gain a better understanding of their loved one’s perspective. This allows them to ascertain how and why certain comments may cause their loved one to feel misunderstood, judged or as if their situation, losses and perseverance are being minimized. As a result, they can move on to learning what kinds of interchange and assistance gives hope, encouragement and the strength to keep fighting.

 All of these things are addressed in IDA’s book, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain, written by Wayne and Sherri (all proceeds go to IDA).

This book gives practical tips on what to say, what not to say and how to help. It also gives insight into why, we as humans, often respond the way we do to debilitating conditions that are not readily obvious. It shares how we may protect ourselves and try to protect our loved one with denial. And it explains how a loved one may appear as if they do not care, when in fact they do. Yet, they just find it too painful to acknowledge the situation, because they don’t want to see their loved one suffer. These points not only help friends and family, but they also help those living with illness or pain better grasp where their loved one is coming from as well. These are the first steps to restoring relationships.

The video below is from the Online Seminar, What to Say, What Not to Say and How to Help People Living with Illness and Pain with Wayne and Sherri Connell. It was presented during the 2012 National Invisible Chronic Illness Awareness Week (NICIAW), founded by Lisa Copen. Wayne and Sherri were Special Guests for the NICIAW Seminar, Invisible Disabilities and the Husband as Caregiver in 2010 that was also featured in 2011. IDA has been involved in the NICIAW week since it’s inception in 2002.

RELATED ARTICLES

Chronic Illness Tips: 263 ways to more than “just get by.” Available to download for FREE! Tips adapted  from IDA’s booklet, But You LOOK Good!  into a collaborative project by NICIAW Founder, Lisa Copen.

FREE Chronic Illness Tips eBook with IDA Founder. Chronic Illness Tips: 263 ways to do more than “just get by.” Lisa Copen and Friends. Rest Ministries.

IDA Founder Guest Speaker for National Invisible Chronic Illness Awareness Week. IDA Press Release. July 15, 2012.

Invisible Disabilities and the Husband as Caregiver. IDA Founder and President, Wayne Connell. Interviewed by Lisa Copen on BlogTalk RadioNational Invisible Chronic Illness Awareness Week Online Seminar. September 16, 2010. Featured again September 2011. Listen Here

What to Say, What Not to Say and How to Help with Wayne and Sherri Connell. Online Conference Guest Speakers for the National Invisible Chronic Illness Awareness Week. Founded by Lisa Copen of Rest Ministries. Video. September 10, 2012

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Comments

  1. 1stBeStrong says:

    When I first was told that I had Fibromyalgia from a Neurologist, I actually was happy! I wasn’t nuts, it wasn’t all in my head. It had a name. Now let’s fix it… so I told my Chiro. and he said, “That’s a cop out, it’s just a catch phrase they use when they don’t know what’s wrong with you!” I thanked him for his honesty on my diagnosis & told him I wouldn’t be back. I couldn’t see a Dr. that didn’t believe in my illness.”
    I now say that Fibromyalgia is like an Octopus with countless tentacles. More grow all the time. I have CF, I have C.Migraines, I have IBS, I now walk with a cane most of the time, I must use a scooter if in a mall or at times in Grocery store if I can go and I am not leaning on the cart. I have a closed head injury from the wreck that we were in. My memory sucks and people say, “C’mon, you remember!” No I don’t!! I have other issues I can’t think of right now. I will after I hit post or over the course of the day.
    My partner tries to understand my issues and the condition of our home and dinner not made often, but she was injured too in the wreck and she works. So I feel guilty and she feels overwhelmed. She too has invisible disabilities. She has Thoracic Outlet in right shoulder from seat belt, herniated/bulging discs in her neck & the seat belt gave her Type 1 Diabetes instantly, as it destroyed her Pancreas!!
    I hate that people fade away and out of our lives. That they don’t invite us to things anymore cus often I have to cancel & sometimes the day of the event. I almost couldn’t go to my Nephews wedding, I had such a terrible Migraine. But I got there & left as soon as they said “… you Husband & Wife”.
    I had a old friend ask me a week in advance to a event in my village that her daughter was playing in. Not only did I get advanced notice, but she gave me 3 diff. times of the day that they would be at the fields. I did have a bad headache in A.M. but was able to go to the 2nd game. I took them to a place to watch sky divers by my home, where we just sat between games and then I went home rather than the next game. I was exhausted, but I had a wonderful time. I paid for that day the following day, with excess pain, but I was out with a friend and had something I could do besides go to the Pharmacy. I wrote on fb to her for all to see that it was done ‘Perfect’. I made sure all my friends on fb knew how she had done it and how great it made me feel.
    Being a ‘Type A’, I wish I could ask for help with things from others, or accept it from my 84 yr old Mom, but I would stand and watch them to be sure they did it my way. I need to learn to let go of that, but I don’t know how…. yet!
    Well, I have rambled on long enough. I am glad you made this video and it got to fb & I was able to find you then.
    Blessings to you both, your spouse is wonderfully understanding and supportive. You are so fortunate in that respect.
    My wish for you is: That you have a day without pain, so you can do whatever you want! And then another day after that. (We can dream!)
    Gentle Hugs to you.

    • Hi Be Strong!

      Asking for help is hard! I haven’t done it for a very long time, because people usually say, “Why doesn’t Wayne do it?” Well, my poor hubby works about 80 hours a week and he does do as much as he can to help me and my ill mom, but he can’t do it all! I can count on one hand how many times I have had help with cleaning that I didn’t have to pay someone for. I have lowered my housecleaning expectations drastically and usually go without – which is hard, cuz I am type A too!

      Yes, I am so thankful to have a supportive hubby! He is amazing! I only wish he just had to work 40 hours a week, then he would have more time.

      Hugs!

      Sherri

  2. Barbara Tabor says:

    Sending you loads of love !

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