January 28, 2014

My Voice Makes a Difference

Yesterday, my friend Kate wrote a post that made me sob, shake, and really want to throw something. As a rheumatoid arthritis patient, she has access to permanently disabled parking. She uses it to her discretion and for her well-being. It makes normalizing her life despite a debilitating disease POSSIBLE. As Kate was using this parking, a woman asked her what was "wrong" with her. Kate responded, crying, and explained the RA (treated by chemotherapy infusions), fibromyalgia, and tarsal coalitions she suffers from and deals with on a daily basis.

To be honest, what angers me about this situation isn't that my beautiful friend was crying. It isn't that the woman ruined Kate's night. What truly, truly angers me is that there is NO compassion for people who deal with diseases that are often invisible.

I know that Kate is so much stronger than anything that woman could have ever said to her. I know that Kate woke up the next morning determined to have a better day. The only thing that didn't change was the fact that there are still millions of people out there who will treat someone else the same way because they are unaware and oblivious.

That makes me so incredibly angry.

When starting this blog, I needed a place to vent about my health struggles. I felt alone and chose publishing my feelings on the internet instead of writing in a journal because I knew there had to be someone... ANYONE... Who was feeling the way I was. It took awhile for me to find a community I was comfortable sharing in, but it soon became the reason I got out of bed in the morning. It became the passion behind my writing. It became my purpose in life. Raising awareness and openly sharing my struggles was therapeutic and beneficial not only for me, but also for other people. People fighting the same disease I am.



Now, since starting this blog, I've had e-mails, comments, Facebook posts, and tweets come in about the disease that I, too, suffer from. Some have been encouraging. Some have been curious. Some have been knowledgeable... And some have been downright ignorant, disrespectful, and just plain MEAN.

I'll never forget the time I posted about my faith and how sure I was God would heal me when He was done using this for His purpose only to receive a comment that said, "If 'your God' is so big, why hasn't He healed you yet?" I remember responding to it with my favorite scripture and shaking my head at how unbelievable the comment was. I also remember feeling defeated. As if there was no purpose or reason behind anything I'd ever shared here.

But then I remembered this: People LOVE to discount the importance of things they don't understand.

That's when I remembered that the words I share here... The stories... The struggles... It ALL matters. It's not whining. It's not asking for attention. It's raising awareness for diseases that people are completely oblivious to. And my voice in this community... It makes a difference.

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11 comments:

The Pink Growl said...

Telling your story absolutely matters!!! Even if we all can't exactly relate to your everyday struggles, I love reading how you solider on through them. And people out there who need support for these types of things are just waiting for your words to land in their lap. XOXO

Jamie Vespa said...

I think you're incredibly brave & strong to come here & share your story & your struggles with the world. I can't begin to imagine what you go through on a daily basis, but it's because I don't understand it that I know I have no right to judge it. I will never understand how people can be so cruel & choose to judge & criticize people whose situations they know nothing about.

Tiffany @ The Fit Train said...

You are so wise beyond your years! I love reading your story, and it does help me. I have fibromyalgia and lupus (autoimmune disease). So I understand what it is like to have an invisible ailment and chronic pain.

God has a plan and we are all given our own challenges in this life. We don't always understand them, and maybe we never will. But I know that while I hate the pain and getting sick frequently, it's a part of who I am. It's shaped me into the person I am today and lead me down some amazing paths. I wouldn't change a thing.

Keep your head up and don't let any negative comments get to you too much. Hang in there, sweetie. So sorry to hear what happened to your friend and hope she has a better day.

Meghan said...

It does absolutely make a difference! Huge hugs to you my sweet friend! xo.

Amanda - Voyage of the MeeMee said...

People are just jerks. I wish I had a better response to this but I don't. Because it's messed up and I can't wrap my head around how someone could be so mean/rude/insensitive.

Amanda aka Manda said...

You are so inspiring and your words do matter! It is so hard to get people to understand a disease they can't see, can't relate to. I've been struggling myself lately and have had coworkers make comments about me being out a lot lately. I want to get snarky but then I remember the grace with which you deal with nasty people and try to do the same!

Tayler Morrell said...

One thing that I've grown up with is knowing that God only gives you the trials that your spirit is strong enough to overcome. Knowing your RA and my husband's MS, I know that both of you have incredibly strong spirits!

Franchesker Scott said...

You are so inspirational. This post rings true for so many people. I am 33 years old and have congestive heart failure. Most people would not know that I have a heart condition just by looking at me (especially with me being so young). YOU are making a difference and I pray that God will continue to use you.

Samantha said...

Hey there. I just thought I would write and say I identify so much with what your friend is going through being asked "what's wrong" with her. I have rheumatoid arthritis too. I was diagnosed when I was 18 months old, but they think I have had it since birth. I inject bi-weekly, I'm on methotrexate, regular bloods etc. It sucks. Some times you just can't get out of bed and then having some ignorant moron attack you for using a disability permit - it's like a kick in the face.. just cause you can't see it, doesn't mean it's not there!! One time, I had just had surgery and I was parked in a disabled spot and a older man approached my far pointing at my permit and then gestured to wind my window down.. I did, just a little and he just launched into a full scale attack that I had no right to park there, that I was a fraud, that I had wrought the system and when I tried to explain he started yelling "bullshit. you're full of shit". That was the worst one, but I get attacked a lot.. And a lot of the time I'm not even parked in a disabled spot - its just people noticing my sticker and deciding to inform me I am a fake.

Anyway, just wanted to share. I am sorry you are suffering with Arthur as well (I have a few friends with it and we call it Arthur haha). As much as I wish you didn't have it too, It's nice to meet another person, especially someone so strong and passionate, to share with!

x Sam
http://in-aeternum.net

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keruxa014 said...

Kenzie...you are SO amazing and inspirational! :') You're so brave and I'm just wow at the things you go through. I love how strong you are and how you won't let this 'stuff' bring you down :) I'm just remembering Job in the Bible, when Satan went up to God to give him the permission to make Job's life miserable., to prove that the only reaons he feared God was because he had everything. Well, Job proved him wrong. It's our faith and trust in God that matters. Material things are just a plus, like when God gave Solomon the things a normal person would've asked for instead of wisdom. There'll be a reward, Kenzie :) Just wait ;) God's going to do amazing things for youuu <3