“But You Don’t Look Sick!”
Preparation: Read Chapter Seven this week.
After reading, begin answering the questions at the end of the chapter. I will list the questions at the end of this post. We invite you to share your insights and experiences, and how you responded to the questions. We will encourage one another in the process. You may have chronic illness(es), but you do not have to bear them alone. Let’s be here for one another.
Note: Except for quotes in italics, words in the post are Marie’s.
Today I took our granddaughter Sophie to lunch and shopping for her 9th birthday. She wanted to go to Red Robin for lunch, so I drove around the restaurant until I found a handicap parking spot. I left the one for handicap van parking vacant. I walked in with my arm crutch, limping my way to the restroom before being seated at a tiny table. My crutch awkwardly leaned against the wall. I had to adjust my hearing aids to minimize the restaurant noise, then it was a struggle to hear Sophie’s words. I took out my reading glasses for the menu, then my distance glasses for the remainder of the meal. Without my glasses, I have double vision. When we finished the meal, I had to make another stop in the restroom before limping to the car.
We drove to Kohl’s where I found another handicap parking spot. This time I lifted my SmartScoot® out of the back of my Subaru Forester, and drove into the store to look for birthday items. Before I reached the back of the store, I had to find a restroom again. While Sophie shopped, I struggled with double vision, but managed to keep up with her. We then moved down to Five Below where she found many low priced goodies. My energy was flagging, but I could keep up with my scooter. After I dropped her off at her home, and parked in my own driveway, I could barely shuffle from the car to the front door. I was thankful that the bathroom was close to the front door. These precious three hours spent with my granddaughter will probably cost me two days worth of energy, but it’s worth the cost to me.
Such is my life with Multiple Sclerosis. I have a sign on the back of my car that says “You can have my handicap parking spot if you take my MS.” I have HCP tags on the car. I limp with an arm crutch or a walker, I drive a scooter for distances and places wide enough to accomodate the radius of its turns. It’s obvious that I have some disabilities. Yet still, after nearly forty years of living with MS, I feel people judging me if they see me climbing out of my car after parking, or standing from my scooter to move to a chair or sofa. I can see the doubt in their eyes. I overhear the muttered remarks such as “Yeah, brain handicapped maybe!”.
Honestly, it’s easier to stay home. And it’s tempting to avoid going out. If you live with chronic illness, either personally or as a caregiver, you have probably faced the same kinds of judgment.
Author Kimberly Rae speaks about it in Chapter Seven. Here are some of her words:
“No one likes being judged or misunderstood, which is why we want to defend ourselves when people say the very common phrase, ‘But you don’t look sick!’ Sometimes they say it out of bewilderment, sometimes out of a judgmental attitude, and sometimes they actually think they are being encouraging by letting us know we don’t look like half-dead drowned rats, considering we are so sick.”
“Here’s my point. There are always going to be people who don’t understand. Always. We can make ourselves sick trying to prove our conditions to them – which isn’t fun since we’re sick already – or follow them around whimpering for their approval. We can even become angry and bitter about their lack of it. Or we can leave them be, understanding this very important truth: We are not responsible to keep everyone from thinking the wrong thing. If someone wants to be judgmental and think we’re faking it or whatever, that is a problem between them and God, not them and us.”
“Please don’t apologize for what your body needs. Most people like to help, they just don’t know what you need. And God blesses people when they help others, so you’re actually providing opportunities for a blessing for them.”
How about you? What do you think? Let’s talk about it.
Group Study Questions
1. Do you feel a sense of guilt that your condition is not obvious enough to warrant everyone’s belief?
2. Do you find yourself responding with:
– Defensiveness, ready to argue?
– A need to prove to everyone how bad it is?
– Sensitivity – they shouldn’t have said that?
– Pity party – nobody understands?
– Hiding and avoiding anyone who doesn’t get it?
3. Again, do you think if you had a sense of confidence about your condition, it would transfer to those around you?
4. Do you think we are responsible for what people think of us? If so, to what extent?
5. How does not communicating what we need lead to misunderstanding?
Find a loved one or friend who has a stable, solid personality. Ask that person if they will help you see clearly when you are struggling. If they are willing, those times when you are worried about what someone might thnk, call your friend, tell them the situation, then choose to believe them if they say that person’s feelings are not your responsibility.