Check them out friends! Like them and share them! Wahoo!
What’s more, it can be even harder to bear the adjustments when friends and family don’t seem to understand what we are going through or why the condition isn’t getting better.
Sadly, because of this lack of understanding, many relationships are broken. Frankly, sometimes loved ones don’t really want to work at it, watching us hurt may be too painful or they simply don’t know what to say.
Since most of us are accustomed to relying on loved ones, work and hobbies to keep us active socially, when those aspects in our lives dwindle down or disappear, we are left with a dilapidated infrastructure. As a result, we must learn to be intentional about building a new foundation of support and purpose.
Here are a few building blocks I have discovered that are essential for us to embed into the groundwork of who we are and in our support community:
2015 Invisible Disabilities Week:
One great opportunity to get involved is the 2015 Invisible Disabilities Week October 18-24. It is a world-wide campaign for people living with illness, pain and injury, sponsored by the Invisible Disabilities Association.
There will be a week of activities people can participate in online! Participants will have the opportunity to share their stories, as well as spread awareness, education and support through photos, videos and MEME’s. This social media campaign will be on Facebook, Twitter and Instagram! Join us and see details at: InvisibleDisabilitiesWeek.org.
Sherri’s blog was published on The Mighty on 10/19/15. Some changes to the article on The Mighty were made by the editors. Main photo source: Thinkstock.
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#chronicillness #pain #injury #disability #disabled #invisibledisabilities #coping #support
People really don’t have any idea what battles I fight daily.
I don’t expect them all to fully understand.
Still, know that if you would like to be supportive, believe me and believe IN me.
I am fighting for my life with courage & perseverance. Believe in me and & join me on this quest or step aside!
Copyright 2014 Sherri Connell.
All rights reserved.
Many loved ones feel overwhelmed by the endeavor of going fragrance free. They don’t know where to start, where to buy products and often fear making someone ill by missing something. Thus, they often avoid the issue and in turn avoid the person living with chemical intolerance.
As I tell everyone I come in contact with, using fragrance free and natural products is health choice for everyone. In other words, it can be viewed as a positive change for all, rather than a sacrifice just for someone who has an issue.
For those who for whatever reason don’t want to change out all their soap, shampoo, deodorant, lotion and hair products, one suggestion I have for people is to keep a Fragrance Free Kit.
Of course, if they want their loved one to visit their home, it will probably need to not have any air fresheners, new carpet, paint, lots of candles, carpet shampoo, stains, harsh cleaners, smokers, regular perfume wearers, etc. On the other hand, if these are not an issues, often there can be some compromise.
First, if the loved one cannot tolerate fragranced laundry products, those will need to be changed long term. These do not wash out easily and linger for many months or longer even when washed multiple times.
Second, we can purchase fragrance free shampoo, soap and deodorant. We keep this under our cabinet and pull them out to use for several showers before visiting with our loved one. We can omit other hair products, lotions, sprays, etc or add fragrance free versions to our kit.
For more information on living with Environmental Illness, the Choose Friendships Over Fragrances Campaign, resources and more: Cleaner Indoor Air Campaign
Do you or a loved one live with debilitating illness or pain? Invisible Disabilities Association
Disclaimer: I am not an expert and this may or may not work for you and your loved one. Please ask your friend or family member what they can or cannot tolerate and what will work for them. Also note that most likely alternatives will not work if there are air fresheners, new carpets, paint, stains, carpet shampoo’s etc. in the home.
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.
The Invisible Disabilities Association 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.
This article first appeared on the Invisible Disabilities Association Website.
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.
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 Radio. National 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.
My husband’s cousin, Brady Renshaw, recently participated in the 2012 Fight for Air Climb in Chicago, hosted by the American Lung Association.
The climb was in the Presidential Towers, which consisted of 2,340 steps, 180 floors and 4 towers! Brady finished in 7th Place with a time of 18:20. Congratulations, Brady! His brother, Cody did an excellent job filming it! Watch Cody’s video here!
In light of Brady and Cody’s adventure, I was motivated to do a challenge of my own. Watch this video if you are in the mood for a little inspiration, entertainment and humor! It’s not what you might think it is!
Buckle your seat-belts! The fun starts in 5-4-3-2-1
The Tower Climb Challenge by Sherri Connell
“I Love it Sherri:) The message is a great one. People with disabilities face challenges that would make the most hardcore athletes cringe. People should remember to praise and encourage those fighting disabilities just as they would an athlete overcoming difficult challenges.”
“Sherri, kudos! Fantastic and funny as always while still delivering a good message. We are actually in Basel, Switzerland for a race today and I watched this in the morning before the race.
What my video doesn’t show is the hundreds of stair climbers that are just doing it to finish or maybe best their previous times in support of charity. There is a CF race in Dallas in which the winner finished in 10 minutes. Another winner that day (and probably the bigger winner) was a lady named Holly. When she was born in 1979, her life expectancy was no more than 18 years. She has Cystic Fibrosis and she did all 70 stories with a time of 44:57. According to the time sheet she was in next to last place, but clearly she won and gave it everything she had within her physical limits. I find that inspiring and thought I would share. 🙂
We’ll have to come over and climb Connell tower sometime, but only if you add a water stop at the midway point!”
In 2010, my husband Wayne and I were special guests for an online seminar about Marriage with Chronic Illness with Founder of the National Invisible Chronic Illness Awareness Week, Lisa Copen. This year, NICIAW did not conduct live online seminars, but featured some of their past workshops, including ours!
Don’t miss the 2011 National Invisible Chronic Illness Awareness Week on September 12-18.
Check out all of the NICIAW Podcasts from past workshops.
Marriage and Chronic Illness – Featured Interview 2011
Encourage a friend living with illness, pain, injury or disability. It’s not that hard! It just takes a simple phone call, note or visit, telling them we believe in them. It can make a huge difference in anyone’s life!
I received a very encouraging note from Stephanie Riggs! Stephanie has been an Award-Winning Journalist and News Anchor for 20+ years. She is also an author and amazing person!
Wayne had the privilege to meet her a few months ago and share my story. She wants to interview me on her radio show (as soon as I get up the nerve and get my brain to work for a few minutes).
Her show is called, Divine Calling with Stephanie Riggs and airs on KRKS 94.7 in Denver and online. Some past guests she has had are: Mercy Me, Jars of Clay, Pat Boone, Laura Hillenbrand and many more.
Thank you, Stephanie!
Check Out My Radio Interviews!
Sherri does not receive any royalties or compensation for radio interviews.