Why Doctors Need Two Left Shoes

legs1After years of serious and thoughtful observation (i.e. doctor visits, hospital stays, and conversations with other patients), I have come to a conclusion. I believe medical professionals should be required to wear two left shoes at work for one day.

Why, you ask? Well, I’ll tell you my theory…

Living with a chronic illness, we go through symptoms that healthy people never usually experience. Because of this, we quietly wish healthy people were able to understand what it’s like to be sick 24/7/365 (including leap year—we don’t get that day off either).

Of course, we would never ever wish our pain on another person—we know too well what it’s like to hurt all the time; to be constantly sick… we wouldn’t dare wish any of this on our worst enemy.

Empathy is a wonderful thing… To have the ability to “understand” what someone is  going through, you can appreciate better what pain can be like—and therefore, treat us better.

That’s why I figure if people in the medical profession wore two left shoes for just one day, they will quickly be taught what it’s like to live (and work) in pain—and hopefully consider their patient’s pain and symptoms/complaints more thoughtfully in the future.

If they ever needed a refresher course? They can wear two left shoes with tiny pebbles added for an extra reminder! What a lesson that would be… Ouch!

It would be a simple, yet effective experiment… don’t you agree?

Wouldn’t it be great to suddenly start seeing people in the medical profession wearing two left shoes?

I’m just sayin’!

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Are Invisible Illnesses Really Invisible?

“But, you look great!”

“I heard about this diet that cures everything!

“You don’t look sick!” 

“You’re here today, so you must be getting better!”

“Think more positively!”

Invisible PainInvisible illnesses come in all forms… Autoimmune, musculoskeletal and neurological only top the list of invisible illnesses and diseases that people live with on a daily basis.

Unfortunately, there’s not enough money for commercials with cute puppies and Clydesdale horses to be able to raise awareness about what an invisible illness truly entails, let alone a cure for it. Besides, the commercials that are already on television showing people smiling while they are taking their medications are total malarkey. They show people hiking, playing tennis, having fun. They don’t show that people are actually more concerned about the side effects of said medications (which for some reason, bigger, badder side effects including death can happen when taking some of these medications); and whether they are the lesser evil to the “possible” cure.

Sure, pharmaceutical companies are making billions of dollars on medications – but a cure?  Probably not in our lifetime… At least we’re consistently given hope that we are close to cures for everything under the sun though. But red tape and controversies make a mess of something that should be really simple – helping people get better.

So you might be asking; what is an “invisible illness”?  Well, like the term states, you can’t actually see the damage that an illness or disease is causing on a daily basis, hence the term “invisible”. Unless we actually tell you what is going on, you have no idea the amount of symptoms we are dealing with – and even then it doesn’t ever quite cover it. The damage is happening right in front of you though – and the pain is very real. Pray that you don’t have to see when we experience a sudden flare and need medical attention (get us to the hospital fast if you do… no stopping for soda refills, please).

An invisible illness can have some of the following on a daily basis:

  • Sharp, Stabbing, Dull, Achy, Electric, all over pain
  • Fatigue – Wears out easily performing simple tasks, or need for rest/sleep often; weakness
  • Memory Loss/Cognitive Issues
  • Depression
  • Vision/Hearing Disturbances
  • Balance/Mobility/Speech Issues – Some people may even appear drunk
  • Concentration/Decision Making Issues
  • Migraines and Severe Headaches
  • The lists goes on… GOOGLE it!

Have you ever had the flu? During the time you are sick every muscle hurts, your head hurts, you just want to slide under your covers and sleep until you feel better, right? Well, with a chronic illness we don’t ever get over our “flu”. If we’re really lucky though, we can go into a remission (it’s pretty rare, but it can happen); and that is a word that everyone with a chronic illness longs to hear.

Because our “flu” basically lasts forever, we need more time to get simple tasks done (if we’re lucky to be able to do them at all that day), or we might even need someone to take over those tasks for us once in awhile because we’re not able to do them. People living with a chronic illness constantly needs to take into consideration whether we’re capable of doing a simple task, and even how much pain and energy it’s going to take to get it done.

A lady named Christine Miserandino wrote a story about how she explained what it was like for her living with Lupus. In her story, The Spoon Theory, she explains to her best friend what a day is like by handing her a stack of spoons at a restaurant. She eventually starts taking them away one by one after performing the simplest of tasks like brushing her teeth and combing her hair. It wasn’t long before her friend was coveting her spoons, and ended up with a fairly good idea what it was like to live with a chronic illness. People all over the world now embrace the term “Spoonie”, almost as if we’re in some sort of club or something just because we’re chronically ill.

As poorly as some (healthy people) think we may be doing, we all want you to know that we are still the same person we were before we got sick… It’s not easy for us to admit that we can’t do everything that we used to be able to anymore; and it’s even harder to accept that this is our new reality; but the one thing we all strive to hold on to is the person who we were before we got sick.

So, if you know someone that has been diagnosed with a chronic illness, or someone that is still fighting for a diagnosis, know that since we are with you today means that we are trying really hard to show you how much we care (even if it’s happening only via social media – because for some of us, that’s the only way we are able to communicate). Even more so, know that if we managed to spend some quality time together or even go out to an event, it took every “spoon” we had to do it… We may not have as many available tomorrow (if we didn’t already borrow some from the day before), but it’s worth all of our spoons to spend our time with you today.

After hearing what I had to say, you tell me…  Is an illness really invisible or not?

Caregiving Overload

Handshake caregiversBeing sick we have to re-learn everything that we were from the time we were little. In my instance, after a bout of “viral” meningitis (and a long list of illnesses that weren’t diagnosed until years later), I personally had to relearn to do things that I thought were simple to me when I was healthy. Doing house chores of any type became near impossible, and balancing the books and working literally burned up in a blaze of not so much glory. My bed became my mainstay, and my body was happy enough as long as I limited my movements–but still kicks up often to make sure that I was still alive… Often. Social life?  That’s a long story; some good, some bad.

Living with a chronic illness we have to work ten times harder just to do the simplest of tasks. Because of such we tend to appear lazy and useless; even to our families. We lose our careers and friends; and worst of all, our dignity. For those that live with incontinence issues, neurologic issues, mobility issues, chronic pain and more, I’m sure you know what I mean.

We all expect that type of change to happen when we’re 80 or 90, but when you’re in the prime of your life, it’s a lot tougher to adjust.

If you were thrust into a world that you were not used to, how would you handle someone taking over your life because you weren’t able to do the things that are necessary to live independently, yet your spirit is still strong? What if you were suddenly thrust into a single income situation with your family, changing the entire dynamics of everything you fought to earn your entire adult life?

By being thrown into the “no-income-burden-of-the-family” status, our lives take an even more death-defying tailspin that seems to never end–and illness is the bully that just keeps kicking while you’re down.

How would you feel if your family started making decisions without you, planned holidays and events without including you in the preparation (or only allow you limited say)–even though they know that they are taking things away from you that you hold near to your heart… But it would just be easier (and quicker) to do it their way? What if they don’t want to follow your traditions or dreams any longer because it takes you too long, in their opinion, now that you are sick?

Should your family start making so many decisions for you to the point that all of your traditions, plans or dreams are shelved just because you aren’t able to move as quickly as you once did?

How would you feel if it was happening to you? How much independence, respect and even dignity would you expect to be able to keep if you ever became ill?

Don’t take it the wrong way, I truly appreciate the fact that my loved ones do what they can to help get things done. But chronic illness has taken away so much in my life that I still want to keep the things that it hasn’t been able to take away… Even if it’s something like holiday traditions. Yes, cooking an entire meal has proven harder and harder for me each year–but knowing that my family enjoyed my homemade creations makes every moment of pain, fatigue and nausea (and the week of recovery time) worth it to me.

Yes, I’ve become a lot slower, but I’m still me.