It is estimated that 1 in 2 people in the U.S. have a chronic medical condition and 96% of these people live with an Invisible Disease (JP Thierry 2013). An Invisible Disease is an umbrella term for a disease or condition that is not visibly noticeable – a hidden condition, which can cause severe pain, cognitive impairments, extreme fatigue, constant illnesses, depression, or a variety of other impairments.
Living with an invisible disorder often creates the added challenge of dealing with people’s perception of how one should look or act. The stigma of many invisible diseases leads to the misconception that one is, or should appear, feeble and unkept, or unruly. When people do not fall into the perceived vision, their diagnosis and symptoms are often doubted by family, friends and sometimes doctors.
Many who are challenged with an invisible disease still desire to live productive and beneficial lives in spite of their condition. This mind-set is frequently not accepted, and in some cases creates stress, which can aggravate symptoms.
My husband and I understand all too well this stigma and how much it can hurt. I am Laurie and I have dementia (early on-set Alzheimer’s and Fronto-Temporal Dementia). My husband, Roy, has an immune deficiency disease that prevents his body from producing anti-bodies (Common Variable Immune Deficiency). We both deal with conditions that usually are not readily apparent.
Together, we are Care Partners, Advocates for the Education and Awareness of Invisible Diseases as well as best friends. Together, we work to find strategies to help me maintain some of my independence and to avoid situations that may exacerbate my symptoms. And we work together to avoid exposing him to conditions that may comprise his immune system – which has been very challenging with COVID! Together, we decided to celebrated our 40 Wedding Anniversary at home alone because it was the best way to shield both of our conditions.
THE INVISIBLE ME
Dementia is like a roller coaster. Thankfully, on most days my cognitive abilities are pretty good. As long as I don’t have to do any kind of math, write a check or remember a lot of things, I can function independently. Then there are the others days such as when I became lost coming out of the restroom at a restaurant and wandered down the street not knowing where I was, or lost on the board walk unable to figure out how to use my cell phone, or forgot how to make a bed, select clothing, or where the bathroom was in my own home. There are times I forget how to talk or walk. These are the “invisible me” times we try to shelter.
THE INVISIBLE ROY
Four-hour infusions every Tuesday. Four years ago, Roy could not walk up our driveway without needing to sit down at least once. For the second year in a row, he had pneumonia three times. He was sick 111 days that year. He slept about 15 hours per day. I was watching him fade away and it was breaking my heart. The doctors first blamed it on Crohn’s Disease, which was a 27-year misdiagnosis. Then it was suggested that perhaps he was depressed. Finally, I had enough and took him to Penn State Hershey Medical Center. There the doctors were finally able to diagnosis him correctly. They were amazed he even walked in the door because his anti-body level was zero.
Now, every Tuesday, I “stab” Roy five times (it’s just a tiny little needle) and he sits through a 4 to 6-hour infusion of globulin to put anti-bodies into his body. Since anti-bodies fight the bad bacteria in the intestines and his body doesn’t make any anti-bodies, he struggles with bowel issues especially in the morning, which has caused us to delay or miss many social engagements. He is often unable to leave the house in the morning and he is sometimes over-whelmed with fatigue.
The InvisABLE Me
YES I am still ABLE to do many things. I choose to live my life focusing on my ABITLITIES rather than my inabilities. Since my dementia diagnosis, I have blossomed into an individual only God could have created. I am an International Speaker on Strategies for Living Well with Dementia, a blogger, a leader, a board member and a dementia advocate. I have organized and/or hosted over 400 discussion groups for people living with dementia, had media presence with New York Times, AARP, PBS, South Africa Times, and many others. I am involved in scholarship fund raising, web-site over-haul, constituting manuals, co-editing training material and much more. I AM LIVING – I AM ABLE to do many things.
The InvisABLE Roy
It is afternoon, his morning “issues” are gone, I am watching Roy out the window now as he digs a ditch and hauls rock, and dirt! I have watched him building the walls on our garage and build a floor in the attic. I still marvel over that beautiful physic! Boy is he strong and handsome! Six days a week, he is free to do as much as he can. It’s only Tuesday that he has limits because of the infusion pump. He still gets tired, but looking at him now, you wouldn’t know it.
We are both a product of an invisible disease. Looking at us today, as Roy works outside and I write this, you would most likely question our diagnosis – until you know the rest of the story. We are a product of what we push ourselves to be and how we choose to think and live.
In this life we all have the choice to make the most of every day regardless of what our visible or invisible conditions are. When the doctor says our days are numbered, we decide what we want those last days to reflect. As for Roy & I, we will continue to make a positive impact in any way we can for as long as we can; to help others, to enjoy life, to accept people for their abilities, and to laugh. Hopefully, this is how we will be remembered.
– Laurie Scherrer
Dementia Action Alliance Board Member