Additionally, being part of a not-well-known or rare chronic illness population has a lot of very real medical and life challenges. Being misunderstood can lead to even more frustration and feelings of loneliness, low self- esteem or depression.
Because of the groundbreaking work of the IPPF and its primary focus on patients, there is a pemphigus/pemphigoid (P/P) community, and no one has to feel alone again. But, because they are rare, P/P isolates patients from the people they spend most of their time with — and those people don’t fully understand. Simple comments or true answers to “how are you feeling?” can be misconstrued by some as incessant complaining. Others don’t want to hear about it. If someone looks okay, they must feel okay. Right? In a word, “No.”
How should people with chronic pain or illness present themselves in order to achieve an understanding from others around them? There is no “correct” answer that works for everyone. But there are choices. And different choices will work better in different situations. If someone is in a wheelchair, using a walker, limping, or having breathing problems, for instance, they will be seen as handicapped or sick.
Most people do not want to be seen as sick, but being seen as totally well, while suffering the debilitating symptoms of P/P, has expectations. If you are not sure where you stand on this, there is an easy way to determine your position.
Draw a horizontal line on a piece of paper: On the far left end write “human being”; in the middle write “human being with a (or several) medical problems”; on the far right, write “walking disease.” You can then think about 1) where you see yourself on this continuum, and 2) how you want others to perceive you. This is an exercise that can be done daily, weekly or any way that helps you. Don’t be surprised if it changes over time. It will affect your mood. It will also affect the way you both “think” AND “feel” about yourself and others. Also, be aware of how YOU perceive yourself; this will directly affect how others perceive you — unless you are a very good actor.
As someone with multiple autoimmune diseases, I sometimes hear disconcerting comments from colleagues and professionals who I suspect actually know better. One colleague I respect, scratched his bearded chin a few years ago and said to me, “Do you know what your problem is? You don’t look as sick as you are.” How does one respond? Whose ‘problem’ is it exactly? It was more than a comment; it was a total misunderstanding of my world.
All I said at the time was “Thank you.” It seemed clear to me that a true response/explanation would take more energy than I wanted to expend. I also didn’t think this person would understand or that he really wanted to at that time. I had to let it go and move on. This caused some more chin scratching on his part. The comment all of us hear is, “ You look good; you must be feeling better.” Where is there a direct link between how chronic illness patients look and how they feel?
These people mean well, which makes the situation difficult. I usually don’t bother to explain things; I do when there is a sincere concern or interest on their part. I don’t want to waste any energy; it is a personal choice. For me, carrying around cards with the IPPF website has been the right choice. I can easily hand it to someone. The ball is now in their court, and they can decide whether or not to take the next step.
Because of my particular profession, more people I know tend to look it up; however, most people will never bother. I am actually fine with it since I have no expectations they will take that next step.
And, I absolutely do not want to look sick. Being understood is always better than being misunderstood, but why would anyone actually want to look sick? Well, believe it or not, there are people who thrive on being ill and helpless. Sometimes it is because of a “Dependent Personality Disorder”, and sometimes it can go back to having had “special” treatment when ill as a child. What are the criteria anyway?
I can have a bit of a “Far Side” sense of humor, and I love to observe other people’s reactions. I tend to listen more than talk. Since I lose my voice easily, this is probably a positive thing for me! I often assign people the task of being a “participant observer” in uncomfortable situations. This can be an eye-opening experience.
Letters and comments that I receive from people and many patients I meet at meetings and presentations say that this is the hardest part for them on an emotional and psychological level. I often ask how they themselves feel when they see someone “who looks totally healthy” using a handicapped space; this is something most people can relate to at some level. This is how others view a chronically ill person with invisible symptoms.
An excellent story and innovative (copyrighted) rationale can be found at: www.butyoudon’tlooksick.com/the_spoon_ theory. It is about one woman’s spur of the moment way to explain to a good friend who wanted to understand her illness, but could not.
At our upcoming Annual Patient Conference in Chicago (last weekend of April 2014), you will have the opportunity to see and talk with both expert professionals and others going through physical and emotional changes. You will learn how others have not only coped, but also flourished.
And don’t forget, you can always ask your Peer Health Coach, the Email Discussion Group, or the IPPF Forums and someone will help find an answer for you.