#invisiblefight

Invisible Illness Awareness week is here!! #invisiblefight is the official hashtag theme for this year, so if you see it floating around or want to share something you see about this week, be sure to post it with the hashtag!

This week has come much sooner than I anticipated. By now I had hoped to be finished with reading/blogging through Sick And Tired: Empathy, Encouragement and Practical Help for Those Suffering from Chronic Health Problems - however that hasn't happened. You know what has happened? Life! I've had good days, bad days, traveling, work, friends, and all sorts of other things in between and in a way it's good that I haven't been just sitting at home, planning my life around my blog posts swimming around in my head!

Something that has not always been a part of my life is my wheelchair. And now that I'm sitting here thinking about it, the first time I ever used a wheelchair (aside from after surgeries or something) was SEVEN years ago!! That is crazy to me for several reasons. One of which is that though so much time has passed, I STILL struggle with using it EVERY. SINGLE. TIME. Why?! It was created to help. To make lives easier. And after every outing in which I use it, I'm grateful I did. Because using my wheelchair allows me to go and do activities that I physically could not do without it - so why is it so hard to mentally sit in that chair each time? Even when I meet new friends I am so insecure that I wonder if they will suddenly un-make plans with me if I mention I'll have to bring my chair. I have this stupid list in my head of the people I "trust" to be around in my chair. Because to add insult to injury, most of the time I don't have enough energy to wheel myself for very long, so whoever I'm with has to be okay with pushing me. People stare at me on a daily basis because of the way I walk, I get stopped doing normal everyday things like shopping to be asked questions about why I walk the way I do or if I believe in Jesus and if someone can pray for healing for me....so I should be used to that. But I'm a twenty something year old who looks fine on the outside. So many times I can read peoples faces, wondering why I'm sitting in the wheelchair or judging me because they believe I am faking and don't really need it. Why is this young girl using a motorized scooter in the grocery store when there are elderly people who need it? Because frankly - some days I just can't function without it. This has been confusing (and rightfully so!) to even my closest friends. On a good day I may be able to go to the grocery store, go to a couple stores after, and be fine. But then there are days when I literally can't walk from my bed to the bathroom. I can't ever predict which day is going to happen when, and so there are some days when I can do things and some days I can't. Just because I did something one day does not mean that I can do it the next. OR - maybe I can - but with the aid of my wheelchair. 

I believe that most of my struggle with my wheelchair is my inner stubborness and frankly being bull-headed. I may be able to push through the pain and exhaustion so I don't have to use my chair, and then be completely useless for the next 3 trying to recover. So you might just say - USE THE CHAIR! What's the big deal!?? Great question. This is definitely something I still struggle with. But I think what it boils down to is I don't want to need it - even though I know I do. I AM a twenty something, healthy looking girl from the outside - but that's not the same story being told on the inside. I already struggle so much with keeping up with everyone else and having this happy, brave face on all the time (which is exhausting in itself) - but being in a wheelchair brings a physicality to it that I can't hide....and that's an issue that will just take me a long time to get over. I know my close and true friends will not be one bit bothered by the extra effort it takes to help me around in my wheelchair when I need it, and hey, I get them primo parking spots too ;) . But next time you see a seemingly healthy person using a wheelchair, motorized scooter, parking in a handicap spot, whatever the case may be - don't automatically judge them. Is there a chance they are abusing a service they don't need? Yes, there's always that chance. One of my biggest pet peeves is non-handicapped people parking in handicap spots. But there's also a chance that they're not faking it or abusive a service. They have an invisible illness. 

This week is for us. To bring to light what we face every day of the year, so that hopefully more awareness is brought to millions of people who are often misunderstood and overlooked. Let me be clear - this week is NOT a pity party. I don't blog these super personal things so that people will pity me - in fact that is the LAST thing I want. If I could choose one thing to gain from this blog, and things like #invisiblefight, it would be understanding. Opening up your mind to a world that you may have no clue even existed. Opening up your heart to the battle that any person you drive by, walk by, see at work/school/wherever may be silently fighting. Honestly one seemingly tiny thing that means the most to me, is when my friends/family look up the illnesses I fight and learn more about it. And that can be true for anyone in your life fighting - taking the time to learn more and to get a tiny glimpse of a different life means more than you will ever know. 

Questions? AWESOME - hit me with them. Comments? Always welcome. Pity? Drop it. None of us want pity. We want understanding and to know that our fight is not in vain, and not fought alone. 

Head on over to the Invisible Illness home page to get more great information and resources on this week! 

Sharing.

This morning as I was considering sharing a quote from the Invisible Awareness Week Facebook page, I found myself once again having an internal battle with myself about whether I should or not. I spend a vast majority of my time making it appear to everyone around me that I am not sick. And I don’t want to become “that” person who constantly is posting stuff on facebook about illness like a big sign on my forehead saying “Don’t forget I’m sick!”…but at the same time this event comes once a year, and aside from posting about my blog there aren’t many times I do post about these things. 

Social media has become this massive platform for sharing everything with the entire world. And what once was just a medium for sharing what you had for lunch today or using emoticons to share your every feeling, can now be used to spread messages – whether they be positive or negative. More and more I’m seeing pictures of children’s classrooms matched with captions from teachers begging the image to be shared so that children can see the vast impact one picture they post can have on the internet and how many people see it. What an incredible opportunity to spread a message! If I’ve been given this platform, and can raise awareness for not only my invisible illnesses, but others as well – why shouldn’t I? And if people get tired of me posting stuff 1 month out of the year, then they don’t have to read it! Granted this argument can also be said for sharing things about faith and spreading the message of God’s love on this amazing platform we’ve been given – but that’s another can of worms for another time.

Just the other day I had a conversation with a friend who is aware of my medical struggles, and she had met someone else who had an invisible illness. And she had the revelation that I wish so many other people would have – you can look completely fine on the outside, and a hot mess on the inside. So many people are fighting battles we know nothing about, and looking at them will not show you all the battle wounds they have on the inside. Nearing every other person on the planet is struggling with a chronic condition, 96% of which are invisible. This week/month are such an important time to raise awareness about it so that millions of people can finally be heard and know that there are so many of us supporting them and we believe that it’s real and not in their head (something we get told A LOT). 

So if you get tired of seeing my posts – I don’t know what to tell you other than to keep scrolling. Not only is this message something I’m passionate about, and this is the only way I know how to help; but this is also a huge growing experience for me. Posting the quotes I see that ring true in my heart, or writing about the daily struggles I try so hard to hide is extremely hard. It puts me in an incredibly vulnerable place and I’m voluntarily allowing people to see my weak spot and opening a door for them to either hit it or embrace it. And I know that God works the most in valleys and in weak spots, so this is also an opportunity for Him to be glorified through this life that He has given me, even if I don’t see the purpose or reason behind it yet. 

This week/month of intentional awareness isn’t about me. It’s about all of us. We just want to be heard and taken seriously. It’s not all our story is about, but it’s a big part that we want to share. 

What's Wrong With You?

This month is a very special month for me, because it is includes Invisible Illness Awareness Week! The official week this year is Sept 28-Oct 4, and you can find more information and cool resources at their website.

Yesterday I started reading Sick And Tired: Empathy, Encouragement and Practical Help for Those Suffering from Chronic Health Problems. As you can imagine, it's written by someone who is in the same boat so many of us are, and she herself has several chronic (and invisible) illnesses. It's SUCH a comfort to read these words that seem to come directly from my brain, but to know that someone else has the same thoughts! Instead of waiting until Invisible Illness Week, I want to blog my way through this book, and in honor of this important week, speak to some issues that we as invisible illness sufferers face, and raise awareness!

Normally when someone is sick someone can simply ask "What's wrong with you?" and the answer is rather simple - a cold, sinus infection, mono...and the conversation ends there. But if you have several illnesses, add to it they are invisible without outward symptoms, how do you explain that? Do I start from the beginning and detail 23 years of misdiagnosis, tests, almost answers, and arrive at the long disease names? I have tried that all too many times and watched as eyes glossed over, realizing they were in for way more than they bargained for. So they are confused, I'm frustrated, and nothing was solved or answered. This is most definitely something I still struggle with, particularly as I meet new people. I want to tell them so they're aware of my limitations or why I do certain things a certain way, but do they really need/want to know every detail of my journey?

So if I don't need to tell the whole story (unless someone asks - of course I'm an open book with telling the whole story if you are wanting to hear it!), and I shouldn't rattle off a list of diseases no one has heard of - what do I say? I suppose it would suffice to have a "nutshell" answer, and one that ends in a positive light so that whoever I'm speaking to doesn't resort immediately to pity or think I'm devastated (at that moment) about the life I've been given.

Take away here: When you ask someone who is chronically ill what is wrong with them, and they look around confused and don't answer right away, don't assume they are making it up or just want attention. It's because they are having the inner monologue from above, unsure of where to begin and how much to tell. Some people are just curious and want to know for their own nosy selves and will be happy with a short answer. Some people are legitimately curious and want to know about you as a person and more about what comes with hanging out with you a lot....so having a "nutshell" answer allows the nosy to be satisfied, and leaves a door open for further questions from those who are genuine.

Hi, my name is Jordan. I have several conditions that affect my muscles and nerves, and I'm in pain/exhausted every second of the day, so I have to often rest when I don't want to, so I'm going to sit down now. Would you like to join me?