When we break a leg, are we better off hopping on it or using crutches? Right after having major surgery, would we recover better if we went hiking or if we rested a bit in the hospital? We all know the answer to those questions. Otherwise, there would be mountain slopes instead of gurneys outside of every operating room.
When dealing with a broken leg, it heals and the person returns to life as usual. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, Ph.D., a leading authority on grief and loss.
Although we might think our loved ones with invisible disabilities are lazy and sleep all day, they may be having difficulty sleeping and are feeling sleep deprived. Thus, we need to allow them to rest whenever possible. After all, they are busy trying to maintain their condition and often have to push themselves hard to accomplish a few simple chores. With each activity they give their effort to, another could be forfeited and a price paid. After being limited for a while, they will begin to learn how to juggle their efforts and will discover what and how much activity causes them to hit a wall.
We need to believe them when they say they cannot do something. Simply because we saw them participating in a task before does not mean they can do it again. “Only she knows her limits and they will likely change from day to day depending on many factors. What she could do yesterday may not be possible today. Don’t question that,” Dr. Rainier says. Therefore, we must respect their limitations without enforcing a guilt trip whenever they are already trying to do more than their bodies can handle.
Illness does not respect people according to their income or status in life. The debilitating effects force people to make decisions and sometimes even change their dreams in order to focus on their health.
Yolanda Foster, wife of famed music producer and songwriter David Foster and Real Housewives of Beverly Hills star, tells Us Weekly that she’s selling her “dream home” for $27.5 million. Yolanda explains, “This is our dream home, but due to my battle with Lyme disease for the past two years, I just don’t have the strength to run this almost five-acre property anymore and should really focus on my recovery with as little stress as possible.”
A huge part of illness is isolation. Oftentimes the overwhelming nature of chronic illness and pain drives even friends and family members away. This isolation turns into loneliness. Guy Winch, Ph.D., a clinical psychologist and author of Emotional First Aid, writes in The Huffington Post:
“Despite living in an era of unprecedented potential for human connection (e.g., the internet, social media and mobile phones), estimates are that 40 percent of adults over the age of 65 will experience loneliness. Indeed, the 2010 U.S. Census found that 27 percent of households in America are single-person households, outnumbering all other groups. Of course, not all those who live alone are lonely and not all people who are lonely live alone.”
As someone who has been a caregiver for almost 20 years, I can understand and relate to that isolation and loneliness. My wife, Sherri, and I hardly ever have guests visit our home and the phone rarely rings, except for calls from telemarketers. We understand firsthand how people’s perceptions and misunderstandings regarding illness and pain many times cause them to stop connecting with those they are closest to.
For example, one of the issues many people with illnesses deal with is the impact of chemicals from fragrances and cleaners. Their body has to decide to fight the chemicals or fight the illness and oftentimes neither works. This illness is called environmental illness, chemical injury or multiple chemical sensitivity (MCS). It can create instant isolation from would-be visitors who love their perfume and cologne more than their loved ones. The Invisible Disabilities Association (IDA) launched the website, Cleaner Indoor Air, to help educate on MCS and the Friendships of Fragrances Campaign to bring-much needed attention to those living with it. People should not be alone, abandoned and isolated because of their pain or illness.
How can those living daily with disability and pain feel like they are not alone? IDA launched a message board in 1999, moved to a forum and then to a large social network, the Invisible Disabilities Community (IDC), in 2007. IDC has been a place of connection for more than 100,000 people throughout the years.
IDA is now thrilled to announce that we are currently moving our community to both Facebook and Google+. We are doing so in order to make it more convenient for our members to communicate through social networking communities in which they are already involved, as well as to offer a simpler format. We have had an incredible response to the move and are elated with the feedback we have received! Both communities can be reached by going directly to www.InvisibleDisabilitiesCommunity.org.
Although people often have differing illnesses and injuries, the IDC allows everyone to come together to discuss the challenges and victories of living with any chronic condition (i.e. losses, loved ones, doctors, tips and positive stories). When people can come together to talk about everyday issues, concerns and share encouraging news with one another, they feel more equipped to greet others in their lives with a more positive and less burdened heart! When a person knows they have friends who care and understand, it often gives them the strength to face the world with courage and perseverance! IDA’s goal is to provide a platform where people can be honest and unload their burdens and be met with compassion and empathy from the community. We also strive to share encouragement and a positive outlook to uplift our members.
IDA’s mission is to encourage, educate and connect people and organizations living with illness, pain and disability. IDA provides a place of both connection and encouragement through the IDC. Since May is Multiple Chemical Sensitivity and Lyme Disease Awareness Month, let’s not allow our friends and family who live daily with pain and illness to be alone and abandoned. Take the time to call them, visit them and share with them about the IDA community of friends. Join us in envisioning a world where people living with illness, pain and disability will be Invisible No More!