"But you don't LOOK sick!"

Okay, before I start this post, let's get all the cliché "guilt trip" phrases out of the way.

Never judge a book by its cover.
Think before treating someone badly, it may be their last straw.
You can't judge someone until you've walked a mile in their shoes.
No judgin', just lovin'. 

Alright.

Now.

This post is supposed to be guilt-trip free. So before you read, please put ALL of those thoughts out of your head. I know the feeling of listening to talks, lectures, going to bible classes, etc. and unfortunately leaving with the feeling of the "glass half empty" rather than half full. I'm going to be completely honest in this post, and some things might sound...well, a little harsh I guess is the only way to put it. So in no way is this post supposed to make you feel guilty, or bad, or depressed, but to hopefully help you understand better what some people are going through, and maybe how to deal with it. My parents are still learning, it's a daily struggle. We really honestly didn't realize how much it would affect our daily lives. Even after all this time, we're all still learning how to live with it.

"Invisible illness" is an umbrella term that captures a whole spectrum of hidden disabilities or challenges that are primarily neurological in nature. In other words, if someone has an invisible illness, they have a disorder that is not immediately apparent to others. It causes them to miss work, school, time with friends or family, and special or important events because they just can't get out of bed. It's not outward, such as a rash, or a skin disorder, or anorexia, or even a broken bone. At least when you break a bone, you have a cast, or a scar. It's something that most people are actually accused of faking. How can you prove it? It's invisible!

It's hard to understand. Whether you have it, or know someone who has it, it's hard to understand. And I really want to help you understand it better. If you've never had to deal with someone close to you dealing with a chronic illness, it might help you to better understand exactly what it is. You never know when someone might come into your life with an invisible illness (or maybe even a visible one!).

So in the past two years, I was diagnosed with two "invisible illnesses".  The first being Occipital Neuralgia, and the second Fibromyalgia. Occipital Neuralgia is chronic nerve pain in the upper neck, back of the head, and behind the eyes; while Fibromyalgia is chronic nerve pain spread throughout the entire body. Both can be really painful at times, but if you looked at me, you would never know (Unless of course it was a really bad day and I was crying and curled up in a ball...). Some days I have to suck it up and just go! (I'm still trying to get better at doing that, rather than just giving up for the day and sleeping).

I found a letter written to those who don't understand Fibromyalgia, and don't have it, and honestly it describes what I want to say perfectly. Fibromyalgia is one of those diseases that doctors either believe in or don't believe in. When I went to Scott & White in Temple, I was told, "Well, we aren't sure what exactly is wrong with you, so usually when it's that case we throw 'em in the Fibromyalgia category. That's just the "We're not sure" disease." ...Well that's comforting to hear! So whenever the Rheumatologist told me that I 100% had Fibromyalgia, I was a little skeptical. How was I supposed to believe her? The last person that told me that said it was just an "I don't know" disease. But she explained it to where I understood it a little better, and did so by saying a lot of what this letter actually says. I'm going to change their words a little bit, but I can't take credit for the letter itself. Please know that none of these are meant to sound harsh, but are meant to help you understand better what somebody with an invisible illness goes through everyday.

Please understand that just because I'm sick, it doesn't mean I'm not me. I might not always be fun to be around, especially when I'm not feeling at my best, but I'm stuck inside this body. I still worry about school, work, family, friends, and life, and I want more than anything to hear about yours.

Please understand the difference between "healthy" and "happy". When you have the flu or a sinus infection, you probably don't feel good, but it'll pass after a few days. This is something that I have and will have to live with forever, and I'm still learning how to. I really do try not to be miserable all the time! I try my hardest to put on a smile when I'm in public! But if I sound happy, it doesn't mean I'm well. Just that I'm happy. I could be feeling worse than ever.

Please understand that just because I can stand for five minutes, doesn't mean I can stand for an hour. It's likely that just that five minutes tired me out, and I'll have to sit down. Like an athlete who just ran a 100m. With a lot of other diseases you're either paralyzed or you can move, but with Fibromyalgia it just gets more confusing...

Please repeat the above paragraph, but substitute "stand" for walking or going out, and so on... it applies to everything. That's what a fatigue-based illness does to you. And please also understand that chronic illnesses are variable. It's possible that one day I'll be able to go jogging or swimming, or go out with friends, and then the next day I'll barely be able to leave my bed. And please don't say, "But you were just fine yesterday!" That was yesterday. Today is today. It's a 'day at a time' thing.

Please understand that I may have to cancel plans last minute. And alongside that, please understand that I may not be able to go to everything, or go out every night, and stay out late. 

Please understand that "going out and doing things" doesn't make me feel better, and will often actually make me feel worse. It may feel good to get out of my house and in a different setting, but physically it could exhaust me. Fibromyalgia can actually cause secondary depression (wouldn't you get depressed if you were no longer able to participate in life?) but it is not caused by depression. And telling me that I need exercise doesn't really help... Trust me, I would be running every day if I could! My self-esteem has gone down a lot because of the weight gain from all the medicines, and because I can't exercise, I have really rough days.

Please understand that if I need to lay down or sit down or take medicine, that I need to do it right then. It's not something that can be sort of put off... Fibromyalgia does not forgive.

Please understand that I can't spend all my energy trying to get well. With a short term illness like a sinus infection or even a longer term illness like Mono, you can afford to put your life on hold in order to get well. But...the word "chronic" means ongoing. It isn't something that goes away. You have to come to reality and realize that you have to spend some of your energy on having a LIFE. I mean, it's not like I'm not trying to get better. It's not like I'm giving up (though at times I have felt like it). It's just how life with a chronic illness is. 


These are my own words:

Please understand that if I seem down or irritable, you've done absolutely nothing wrong. At times I just can't put on the happy face anymore. 

Please understand that just because I'm not doing as much, doesn't mean I have it easier. I may not have a steady job, and I may not do as much during the day, but that's because what I am doing is at my limit.

Please understand that when I say, "I'm tired", after I woke up sometime after noon, doesn't mean I was asleep the entire time. Most of the time during the night, I'm awake, and I probably have to go take a hot shower/bath to relax my legs and arms because they hurt so bad. I can't tell you how many 3:00AM showers I took my first semester.

Please understand that even I don't understand it completely yet. I'm still learning every day how to live with this.

And most importantly:

Please, please understand that I need YOU, yes, YOU, to understand me. Not this sad, sickly girl who doesn't feel good. No. I need you to understand the girl on the inside. Jenae. The girl who loves Photography, and drawing. The girl who loves to smile, and in turn make others smile. The girl who loves Arby's a little too much. The girl who is way too picky for her own good. The girl who has an unnatural love for the TV show Psych. The girl who can quote the entire first Pirates of the Caribbean movie. The girl who is OCD and a germaphobe. The girl who actually likes doing chores, and cleaning. The girl who loves to sing. The girl who can be really shy but completely crazy. The girl who loves her family with all her heart. The girl who is addicted to Dr. Pepper. The girl who has had more cell phones in her lifetime than necessary because she keeps breaking them. The girl who loves her friends and would do anything for them! The girl who loves Jesus Christ and has faith that could move mountains. That girl. I may not always have that smile on the outside, but I promise you, I will always be all those things on the inside. No illness will take that away. 

I may have had a few rough patches, but I am and always will be Jenae Corryn Hardcastle. 

And that's ONLY because of my faith, my family, and my friends.


I know that...a lot of this is really depressing, and a little sad; but like I said, I just want to help people understand. I've never had to deal with something like a chronic illness. And nobody close to me has passed away. I've never had to deal with tragedy, or something heartbreaking. My great grandmother passed away when I was like six, but I barely remember it. So this is all new to me. I've had to deal with hospitals, and mean doctors, and severe depression, and so much more than I ever thought I would as a 17-19 year old. I feel like I've grown up faster than most teenagers. I really don't even feel like a teenager anymore...


But you know what's amazing? Technology. Specifically Boston Scientific.

Because of Boston Scientific, I can get out. I don't have to stay at home all day. I can go back to college. I can go see a movie at a theater. I don't have to go to the ER every 3 days. I don't have to be on numerous heavy narcotics. I can hang out with my friends more often. I can have a life. I thank God every day for the spinal cord stimulator, and that it was successful.

I may not understand why this is happening to me, but as a very wise woman named Lizzie Velasquez once said, "You have to stop asking why, and start saying 'thank you'." I need to start looking at my condition as a blessing, rather than a curse. To hear about Lizzie's story, click here. And believe me, you'll want some tissues.


I hope you leave this post with a new perspective and understanding of all the invisible illnesses. And please, please don't think I was trying to make you feel bad or guilty, because that's the last thing I want to do. I want so badly to help those around me understand better how to live with someone who has something like this. I felt so ill-prepared and like I said I still don't know how to live with it exactly. But if I can help others, that's what I want to do. I want to help others who are struggling with the same thing as much as I can. I may be young, but I'm passionate about helping others who are hurting. Especially hurting in a way where nobody can see it. Because I REALLY do know how they feel.

So yes, all those cliche sayings at the beginning could apply to somebody with an invisible illness. They may seem fine on the outside, but "happy" doesn't mean "healthy".

As for me, I am happy. And right now, I'm healthier than I was. I'm learning how to live with two chronic invisible illnesses, and so are my friends and family. It's not easy. It's actually really, really hard. And it takes a lot of patience. But with God, anything is possible. Even living with Fibromyalgia and Occipital Neuralgia as a 19 year old. And passing all my classes at the same time. Now that is a miracle! Haha!