Looking the Part

imageInvisible disease:
A disease that is not necessarily visible to the human eye; hidden; concealed from others.

Parkinson’s disease (PD) can be known as an ‘invisibile’ disease. Because PD is most commonly known to be a disease that is known by tremors in the extremities and shaking. For those that don’t realize that there are some patients of PD who don’t actually experience the shaking or tremors, it can seem the patient is “faking it” or “isn’t that bad.”

Ever heard those comments?…

I have heard of some people with PD who take over fifty pills a day just to feel ‘normal’ and I can assure you that their ‘normal’ is much different than most everyone’s normal. Instead of having obvious tremors in the extremities, a person with PD can experience tremors on the inside, making it even more incomprehensible to someone who doens’t knwo much about PD and assumes you must have tremors to have the disease.

“But I do have tremors,” the patient may defend. “You just can’t see them. They’re on the inside.”

The other person is probably thinking you’re crazy. But it’s true and when I think back to when my symptoms began, I can remember feeling tremors inside and feeling like I was the one going crazy and feeling I couldn’t do anything to make it stop.

“But you don’t look sick,” your friend might comment.

What does a person with PD look like?

Well, one can have brown hair and blue eyes, forty-ish, have tremors and nothing else. One can have gray hair, 72 yrs of age and walk stooped, shuffling their feet, seem a bit confused, have tremors and more. One can be an athlete, run marathons, never seen to have a physical problem in the world. There is a saying, “If you’ve seen one person with Pakrinson’s, you’ve seen one person with Parkinson’s.

When I went to the World Parkinson’s Congress a few weeks ago, I think the thing that struck me most was the diversity how PD affected the people with the disease. No two people wore it the same. I have PD and you’d think I’d not be surprised by that, but I was. But, going back to the invisible disease thought and knowing that PD is an individual disease, you’d think it wouldn’t have surprised me to hear from several other PD patients, “You don’t look like you have PD.”

So I ask again, “What does a person with PD look like?” Maybe I should ask, ‘What is a person with PD suppose to look like?’

Most people would undoubtedly bring Michael J. Fox to mind, using him as the ‘poster child’ for a frame of reference. The only problem is, he kept his disease hidden from the public for a good ten years so while it was progressing for those first years, he “didn’t look like he had Parkinson’s.” He didn’t “look sick.” He didn’t “look that bad.” Maybe he was “faking it.”

“Smile. It can’t be that bad,” I have heard someone say to me. How do you explain to an absolute stranger that you have a disease that takes away your smile and even though you may be overjoyed on the inside, you don’t appear that way on the outside? How do you explain that yes – yes it can be that bad when your meds aren’t working well and you can barely move your back and neck due to the stiffness and pain and you could go on and on but you don’t.

You don’t look “sick” when you are struggling with heart issues, Alzheimer’s disease, a kidney problem, find a lump in your breast, deal with twisted intestines, suffer with hemorrhoids – need I go on? And yet, we can have a bad case of acne, a broken arm, a wound that won’t heal, or a dislocated shoulder and you’re not sick.

There is a crazy misperception that in order to be sick, the rest of humanity must have evidence that convinces them you’re not faking it and it just may be worse than they understood it to be. A disease they couldn’t necessarily see and you, as the patient, may not be able to fully explain.

An invisible disease. A disease that may not look like anything, but if you’ve got it, it’s something indeed.

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