My mom and I have been living with debilitating illness for many, many years. Two and a half years ago, she was diagnosed with Lung Cancer. This is a short video of my mom expressing her incredible attitude and perseverance after an appointment with a new neurologist last week!
You are amazing, Mom!! Happy Mother’s Day! I love you!
Living with Environmental Illness is a challenge that often brings about isolation from public, friends and family.
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.
I am so thankful for my family who made it possible for me to spend the weekend in their home for Thanksgiving. The weekend was filled with being surrounded by my amazing nephews and I was loving it!!
I enjoyed every moment of the kids running around, playing, wrestling and most of all for their giving and caring hearts! It was incredible to be there with my sister, brother in law, their kids and Wayne’s mom (Karen). I have not been there for a long time, because they had some remodeling done and it took a while for all the new paints and carpets to out-gas.
What’s more, they came and stayed at our house for two days after Christmas. And, we were able to spend Christmas Eve Day with Wayne’s dad, mom (Eloise) and more family. Yay!
something that does need to be changed ahead of time) then using FF shampoo, soap and deodorant before we spent time together.
On 12-12-12, HuffPost LIVE produced by The Huffington Post a video interview and article with Wayne Connell, the founder and president of the Invisible Disabilities Association (my hubby) and me.
The show was titled, “A Tick Bite Changed My Life Forever” and was hosted by Nancy Redd.
Holy Toledo! How cool is that! As of today, it has 117,771 views! Although I mention Lyme, the interview is really about ALL living with debilitating illness and pain, no matter what their diagnosis. Most of all, it is about helping friends and family better understand.
The Huffington Post wrote:
Sherri Connell, who suffers from Multiple Sclerosis & Lyme Disease, and her husband Wayne Connell, the Founder & President of Invisible Disabilities Association, joined HuffPost Live to tell Nancy Redd Sherri’s story of contracting her illnesses through a tick bite and how they have turned it into a positive thing by founding an organization to help those with disabilities.
“When I was fourteen I was bit by a tick but at the time I didn’t know it,” Connell told Redd. “But, I started feeling chronic pain soon after.”
“I fell in love with her and we got married in ’94. And in ’96 she coined the phrase, “Invisible disabilities,” said her husband Connell.
The show was produced by the Huffington Post with excerpts from the HuffPost Live episode from December 11, 2012 entitled, “Not Handicapped Enough.” Interviewed for this segment was Wayne, Karyn Buxman, RN, MSN and Elsa Sjunneson-Henry and was hosted by Nancy Redd. Read full story!
Watch the 3 minute show, “A Tick Bite Changed My Life Forever” below! Share it with friends, family and groups to increase awareness and send a message to the media that these are the kinds of articles people want to hear and read about!
RESOURCES
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.
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 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.
Snickers is not only my pet. She is my precious baby and she alerts me when I have anxiety, stress, blood pressure, heart rate and sugar changes. She paws me, nudges me, sits on me and licks me until I calm down. When I am on the ground and need help, she barks and goes to get my hubby. She also alerts me when there are gas leaks or other smells in the house. Most importantly (tee hee), she barks (relentlessly) when she is out of water or food. Good thing! Cuz I’m doing good to remember mine!
An Alert Dog is just one type of Service Dog, which is trained to assist a person with a disability, by performing tasks that mitigate their disability. There are many specific requirements and qualifications for being a Service Dog.
Alert Dogs help many with PTSD, TBI, Diabetes, Autism, anxiety disorders and more. Many can even remind people to take their medicines, wake them up from nightmares, retrieve items and even call 9-1-1.
Although Snickers can perform several tasks for me, I do not take her to restaurants and such. She does not at this time have the proper behavioral training required to stay focused on me. However, we did take her on our latest trip out of town, in which she was a huge help in keeping me calm and watching out for me in the car and where we stayed.
Therapy Animals and Emotional Support Pets are not the same as Service Dogs and are not granted entrance into public places. However, Therapy Dogs that have had specific training can receive permission to enter such places as hospitals, long-term care centers and schools for therapy purposes.
Read about Service Dog guidelines and requirements from the Invisible Disabilities Association.
NOTICE! I do my best to relay information, despite my severe cognitive dysfunctions. Yet, I may not always convey what I intended to say. Please remember that I am not a medical or legal professional! Seek legal or medical advice from an expert. Thanks!
Minnie and Sherri at the Health Services Center
Earlier this year (2011), my husband and I had to take a trip to California for medical reasons. Since we were already going to be there, we decided to first stop in Disneyland for some much needed fun!
This was a huge endeavor, not only because I have Multiple Sclerosis and Lyme Disease, but because I also have severe chemical sensitivities and food allergies. Turns out that they were extremely knowledgeable about food allergies, so that was awesome. Read more here!
The biggest fear was that we had never taken a long road trip and we had no idea if I would even be able to stay in a hotel, because of all the chemicals commonly used to clean them. However, they were extremely helpful regarding the room! In fact, they are accustomed to cleaning rooms without chemicals for those who request it and they even have linens and towels that have not been washed in fragranced detergents.
Even arranging all of this, it was a gamble, because the regular use of chemical cleaners and sprays usually linger in carpets, walls and beds. Nonetheless, I am elated to report that the room was delightfully wonderful! I didn’t notice and residuals at all!
The only issue I had was when the housekeepers cleaned the room below me, it wafted up into the vent. We shut it off and left the room. It was fine later.
Of course there were other concerns that could not be helped, in which I had to take care to avoid. For example, housekeeping carts and other sprays in halls. Also, being exposed to laundry detergents, soaps, lotions, deodorants, sunscreens and more from the people in the parks. So, we scheduled the stay during a very quiet time and thankfully I only ran into it briefly a couple of times. In addition, there are rides and shows that have fragrances emitted; but the accessibility crew helped us map those out so that we didn’t go near them.
Finally, the last concern on the agenda were the air fresheners in the park restrooms. Since I am unable to enter a bathroom with those in it, I wouldn’t have have anywhere to go.
My husband (Founder and President of the Invisible Disabilities Association) was able to share information with them about chemical sensitivities, asthma and allergies through the Cleaner Indoor Air Campaign. After Disney reviewed the statistics and details, they made a permanent change at all Disney Parks for the sake of those with environmental illness. Read more here!
I can’t guarantee how your experience will be at Disneyland or at any other hotel or resort. In fact, after our wonderful stay at Disneyland, we booked a hotel so that I could visit family I had not gone to see in over 5 years. Even though they claim they cleaned with the products and did not spray anything, the room was thick with chemicals. We had to pay for the room even though we immediately left. My husband drove up and down the road checking out other hotels, but none were tolerable! It was a nightmare!
Video above of Sherri interviewing Pluto and Minnie and thanking Disney for all they did.
RELATED STORIES
Cleaner Indoor Air Helps Disney Make Change for People with Environmental Illness
My Visit to Disneyland with Food Allergies
ADDITIONAL RESOURCES
Sherri with Chef Nick
In 2011 I had to go to California for medical reasons. My husband and I had not been on a vacation in a very long time, so we decided to stay at Disneyland!
This was extremely overwhelming, not only because I have Multiple Sclerosis and Lyme Disease, but because I also have severe chemical sensitivities and food allergies. We had never taken a long road trip and we had no idea if I would even be able to stay in a hotel, because of all the chemicals commonly used to clean them. The hotel did a fabulous job with our room! Read more here.
As for addressing my food allergies, Disney was incredible! It turns out that they are very well educated about food allergies and sensitivities. Guests with Disabilities contacted Nick, the hotel’s main chef, to discuss my allergies. Nick contacted me for a list of concerns that we were able to discuss.
I have a very extensive list of food allergies, so we opted to discuss them ahead of time. However, in many cases, a guest can alert their server at the restaurant about allergies or sensitivities and a chef will come out to discuss their options. Of course, if you go to the restaurant, Goofy’s Kitchen, like we did, you will get to meet the one and only Chef Goofy!
Wow Disney! You really go above and beyond to help guests enjoy the whole Disney experience. Thank you!
Video of Sherri interviewing Chef Goofy and thanking Disney for the wonderful time!
RELATED STORIES
Cleaner Indoor Air Helps Disney Make Change for People with Environmental Illness
My Visit to Disneyland with Chemical Sensitivities
ADDITIONAL RESOURCES
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
Everyone wants someone to believe in them. Won’t you tell someone today that you do?
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!
