A Day in My Shoes

How many times have you said “If they could spend one day in my shoes (one minute even) they might understand how I feel”? I’m guilty of saying this as well, but the more I really thought about what those words meant, I’ve cut it out of my vocabulary. Here’s why.

As someone with multiple invisible illnesses, I live every day in constant chronic pain. I manage that pain as best as I can, but it’s always there. I would never wish this on anyone… not even for a minute. It’s easy to think differently when your doctor is staring blankly at you while you are trying desperately to explain your symptoms (and all they do it add on another prescription). It’s easy to think that way when you see a post from a (well meaning) friend or family member trying to convince you that their product will cure everything. It’s especially easy to think that way when someone judges you for using your disability accommodations (like parking placard, benefits, mobility help, etc.), where you’re left feeling broken and alone. Why shouldn’t they feel your pain?! Why shouldn’t they know just how horrible they’re making us feel with their words? Because we have to be better.

Think about it. How can we advocate for our illness if we’re willing to allow anyone else to feel that same pain? For me to say “I want you to know what this feels like” is like me saying “I honestly think that you should be put in an iron maiden that’s set on fire, that might give you some indication of how much pain I deal with on a daily basis”. This might seem like an over-exaggeration to some, but for anyone that’s been through a flare… it’s completely accurate. We have to be better than that.

Let me put it another way.

As a parent, I strive to teach my children the difference between right and wrong. I honestly believe that most parents want the same for their kids. Not all people succeed in this goal, but it is an inherent desire we all have. Unfortunately there are some people out there that choose violence as the answer to every problem, and therefore instill that mentality onto their children. I hope and pray my kids never see that in me. This is one reason why I would never want them to hear me say that I hope someone else could feel my pain. They know what I go through every day, they’re not blind to my pain. So to curse someone else with the same infliction, would be as violent an act as any they could see on the news. Is it starting to sink in?

Education is key! Let’s annoy people with awareness posts to the point that they have no other option than to ask what’s wrong. Let’s make hand-outs for people that explain your condition, so when someone judges you for using a prescribed medical device or doctor issued handicapped placard, they learn something new. Let’s make our voices heard! Just because our illness is invisible, doesn’t mean we are! I never want you to feel this pain, now take the time to learn about mine.

The Positivity Police

“Just stay positive!”

“No one wants to be around a Debbie Downer.”

“When you have a bright outlook, nothing can look too dark.”

Shut. Up.

I know that being negative all the time is no fun for anyone, especially our friends and family. But there are some people who take it upon themselves to act as our positivity coaches, the one that’s going to pull us out of our “funk” (no matter the cost). Then it turns into a boot camp, instead of a counseling session. Every time they speak, the condescension oozes off of them like Slimer from the Ghostbusters. Guess what, I don’t need it! Surprisingly enough, I am a very positive person. If I were not, I wouldn’t be here.

Let me explain something very important (this is mainly for the able bodied people readers, but anyone dealing with chronic pain make sure to pass this along).

If we complained HALF as much as we felt like it, we would never stop! It would be 24 hours a day, 7 days a week. So, when we mention in any small fashion that we’re in pain, we are in extreme pain. Something different is going on that is over and above our typical pain, and it’s so bad that the barrier has been breached. It is to the point that something has to be said. If we don’t say it, we run the risk of everyone saying “Well, why didn’t you say something?!” when we end up in the hospital, can’t work the next day, and so on. So, do NOT blow it off as just another bout of negativity or complaining. It is serious, always!

To all the positivity police out there… stop it, please. I’m not saying to never pass on a positive message, we appreciate it! I’m saying, don’t expect us to never be negative about our condition. It is going to happen, and we have to be able to feel that. We are entitled to our feelings, as you are entitled to yours! My pain has forced me to see the world in a whole new light, and (even though I 100% believe in being positive) I just don’t need anyone else constantly telling me the best way to stay positive. Now, I’m sure I sound like a huge downer, I swear I’m not! I’m upbeat and tend to be a very strong person (I even pass along some of those positive messages on social media sometimes). My point in all this is when someone has chronic pain, the last thing they need is other people forcing a bunch of anti-negative rhetoric at them. Be an ally for people with invisible illness! Be there for them, don’t treat them like their pain is anything less than what it really is… horrible.