A caregiver, who wrote in response to the post, “Managing Health Information On-line” inspired this post. Caring for her mother with Parkinson’s Disease, she wrote “I WANT our family to be able to participate with mom. Aging in home is not easy. Some days I feel like the work never ends. But we wanted mom with us, and like a lot of families, we were able to figure it out. The Care Diary from eCareDiary became a BIG part of our plan and our routine. Being the ONLY daughter, it sort of coerced my brothers into admitting that mom is NOT okay -- and it invited them into reality as the loving sons they are.”
Where she writes that the on-line diary helped her brothers admit that Mom wasn’t okay, triggered thoughts of one of the difficulties with chronic conditions- many people living with a chronic condition(s) have no obvious signs of it. How a person appears may have little connection with how they are doing. Further, how they are really doing and the acceptance of that by providers, family and friends can be very problematic. These are variations on a theme of accepting chronic disease as part of life.
The very idea of chronic disease-something that will be dealing with for as long as we live-can be overwhelming for all involved. There are lots of reasons why family and friends don’t want to acknowledge this, and even our health care system is trying to design a model to reflect the change in how we live, age and die. The longer the average life expectancy becomes, the more difficulty we have accepting that we are mortal.
Many times I will visit someone in their home and they are clearly sick and having difficulties. When it’s time to go to their medical appointment, they make every effort to shower, dress and even put make up on. Their provider rarely sees them in their home setting, so they go by how the person presents in their office. I’ve had more than one conversations with providers about the need to understand that how the patient appears isn’t necessarily a reflection of how they are.
So why do patients “dress up” for their appointments and/or for visits with family and friends? Some patients have a desire to please their doctors. Others think if they look good, their provider will agree and somehow that will influence how they are actually doing.
Looking presentable, at the very least in public, is very important for many, and there is something to be said for the idea that if “I look good, I’ll feel good.” Many an elderly person will say, “But I want to look for my grandchildren so they’ll want to come see me again,” or “I don’t want them to worry.”
But back to your provider visit. When you have a medical appointment, be honest about what’s going on if you want help in dealing with your various issues. If you feel rotten that day, go to your appointment in your pajamas. How you appear does make a difference in your provider’s understanding of what’s going on.
As the caregiver noted above, her brothers didn’t fully grasp how Mom was doing until they had a chance to follow her progress via eCare Diary. Probably the biggest discrepancies I see are between family and close friends and the person and/or caregiver. Any number of people have told me how frustrating it is when they relate that they are not feeling well, only to be told “but you look so good.”
One colleague of mine, who was literally just a few months from dying from AIDS, looked so healthy that people discounted how sick he was. He finally started responding to the “but you look so good” comment by saying, “Yes, my plan is to die young and leave a good looking corpse.”
Another woman, living with several major chronic illnesses, told me how embarrassing it was for her to use a “handicap parking” sticker. “I just can’t walk that far anymore, but people stare at me when I park in the handicap spots.” To make matters worse, depending on the day it may have been all she could do to get into the store before collapsing into one of the electric carts. Other times, she could walk the full length of the store, only to find it very difficult to make it back to her car.
This woman’s story serves as a twofold reminder a) we don’t know what’s going on with someone so therefore don’t judge; and b) you know what your limits and strengths are, so what other people may say, do or think in situations like this ignore. They only have power to make you feel a certain way if you give it to them.
Getting family, and even caregivers to accept how sick someone might be, is complex to put it mildly. I’ve been put into this position, more times than I care to, while serving as a person’s advocate.
Since I’m taking notes during their hospital stay and/or medical appointment, I have a good sense of what’s going on. That doesn’t mean the family/caregiver is ready to accept it. The reasons for this are varied. It’s hard to accept that someone we love is ill. It’s not just about accepting that someone might die. A very real concern is your time commitment to helping them and the many ways a diagnosis and change in health status will impact your life and theirs.
In situations like this, I’m a big advocate of a team meeting of the family with the health provider, even if it means some members are on conference call. I’d encourage families to follow the example of using the e-health record so that everyone who needs to be in the loop is at least reading the same page.
So if you see someone that you know is sick, yet they look terrific, do you just ignore it? Maybe the easiest way to deal with it is to say something along the lines of “Are you feeling as good as you look?” There isn’t one PC (politically correct) answer here.
The take home point is that how a person may look and function can’t always be taken at face value, particularly when it comes to someone living with a chronic disease.
“But You Looks so Good” and 7 Other Things Not to Say to a Person with a Non-Visible Disability
National Invisible chronic Illness Awareness Week (was Sept. 13-19): This website provides downloads of workshops that took place during the week as well as a way to connect to others.
But You Look So Good: From the National MS Society
But You Look So Good by Richard Cohen, an Emmy-winning TV Producer Living with a chronic illness