One of the biggest challenges those of us living with a debilitating condition are faced with is when people hear about our illness or injury, they reply, “But you LOOK good!”
Now, please understand I am not talking about telling someone they look nice. Everyone wants to look their best and nobody really wants to look sick. We are no different than anyone else, as we also appreciate a compliment now and then.
On the other hand, what I am referring to here is when a loved one replies with disbelief, “But you LOOK good,” as if to say, “But you don’t LOOK sick (or in pain) to me.”
Unfortunately, this has caused strains and even the ending of relationships, because people jump to the conclusion that since the person looks okay, they must simply be lazy, malingering or at the very least, exaggerating.
When I lost my horse, house and career to illness, I was devastated. All of my life, I had worked multiple jobs, gone to school, excelled in so many other activities and had so many goals for my future. I was just about to land my dream job and complete my Master’s Degree when it was all whisked away in a moment. So I set out to regain my health and get my life back, with sheer determination.
Yet, from the beginning, people have struggled with believing my illness could possibly be as bad as I told them it was, because they could not see it. This lack of belief in my word, my character, my integrity and my losses ripped my heart into shreds, as I never ever would willingly give up any part of my life because of being tired, worn out or had nominal aches and pains.
Feeling misunderstood and alone in the mourning of all I had lost, I soon began to dread meeting new people or even talking to friends. It seemed like everyone felt they needed to tell me that to them, I didn’t really look disabled or unable to work.
I had been writing in my journal about what I was going through and what people were saying from the beginning. So, my husband, Wayne, posted some on the internet so I wouldn’t have to grapple for words right on the spot, but I could give them a business card with the website address and they could read all my story and illness if they wanted to.
I had come up with a term that described my new and unwanted limitations that had stolen so much, yet others could not comprehend, because they could not see my illness and pain … it was an invisible disability. I had never heard it nor seen it ever before, but the words seemed to paint the perfect picture.
Soon, we learned that I was not the only person dealing with this preponderance of skepticism. Emails started pouring in from around the world telling us that their friends and family didn’t believe them either! My husband’s passion then began to grow from being protective of his wife to wanting to champion for millions who are not only battling unwanted symptoms and limitations, but also losing relationships to a lack of understanding invisible disabilities.
Wayne began to gather more journal writings and compiled a booklet called, “But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain” so that others could help those around them better grasp what they are going through. This booklet can be purchase through the 501(c)3 non-profit organization that Wayne founded, the Invisible Disabilities Association (IDA), with all proceeds going towards their cause. IDA encourages, educates and connects people and organization around the world touched by illness, pain and disability around the globe. They reach out through pamphlets, booklets, resources, videos, radio, seminars, events and a social network, My Invisible Disabilities Community.