A Mask I Can’t Hide Behind…

This blog post is not an easy one to write… Mostly because it shows a side of me that I don’t share unless you’re close to me. But the awareness that I hope it will bring is more important than my image of coming off healthier than I really am. So let’s do this thing..

When you see me, I guarantee you don’t see the health battles I face daily… and that’s not necessarily a bad thing. In fact, most of the time, I love that fact. Well, I used to love that fact.

Growing up, I could hide my back braces under my clothes. I could hide my surgical scars. I could hide my pain. I learned to hide a lot because it made things easier. But fast forward to 2020-2021 and being able to hide what I’m going through is suddenly make things a whole lot harder than they need to be.

There’s a list of medical issues on my chart: Scoliosis, Kyphosis, Syringomyelia, Spondyloarthritis, and those are just the musculo-skeletal issues. I also have nerve damage and hyper sensitive nerves. I know which veins to show my lab technicians when I get bloodwork because some veins look easily accessible, but once they get the needle in, the vein is inaccessible. Sneaky little guys – I know. If I’m lucky, I get the same lab technician every time I go! Other times, I get like three people and then they call in an IV Team because they just can’t get access to a good vein.

Also, when they can’t find a vein, 99% of the time, they say “oh I bet you haven’t had enough water today”. Like, I haven’t had hundreds of tests before this one knowing that exact piece of information. Then, when I proceed to tell them that I’ve had four back surgeries and more hospital visits/tests/etc. than someone my age (or their age), their tone changes. Let me also state that I don’t crap on everybody’s parade. Like I give everyone so much grace when they’re working with me because most of the time, it’s the first time they’ve met me and they don’t know my medical chart is bigger than some of their medical textbooks. So when they try to get a good vein and make a comment that would make sense to most people, I just laugh and try to lighten the mood while I tell them why they can’t get my veins. Those little guys have been poked and prodded so many times that they’ve all gone into hiding and built walls of scar tissue so people can’t find them.

I could go on and on with more stories, but for now I’ll save you the medical pity party that you probably would like to throw at this point. Been there. Done that. Really don’t want another one. But, I say all of that because there is a medication I’m currently on that makes my immune system become compromised. It’s a lifesaver for my pain levels, but for some reason, makes me susceptible to lung infections.

Before I had this medication, there were days when I physically could not get out of bed. It’s like my body hit this pain threshold and just completely shut down to protect itself {I’m not coming from a medical standpoint on that one, it’s just what it felt like}. So while I wanted to go to work/school/out with friends, my body wouldn’t function. So, I rested. In hindsight, I knew it’s what my body needed. But, when you’ve dealt most of your life with a chronic illness, the last thing you want to do is give it an upper hand – at least that’s how it felt. Talking with my rheumatologist, we decided to try Enbrel and to this day, it’s kept those intense pain flares at bay! Sure, I still have some bad days, but nothing like that. Only down side? This medication compromises my immune system.

So when things like a global pandemic break out, you might as well put a giant blinking arrow above my head for all the germs! “Pick her! She’s weaker than the others!” A year ago, when this pandemic first started, I was not okay… and I realized why soon after. When the news came out with who this virus severely impacted, it was older people and those with pre-existing conditions. So….. me.

But like I said before, I got really good at hiding the chronically ill side of me. If I was having a bad pain day, I brush it off by telling people that I was sick. When you tell people that you’re in so much pain that you can’t get out of bed, they’re going to do one of two things {MOST of the time}. They’ll think you’re over-reacting, or they’ll flip to the other extreme and want to call an ambulance. When you have a chronic illness, you don’t need to call an ambulance every time you have a bad pain day. You know when you need to go to the hospital – trust me. So it’s easier to tell people you’re sick than to open up the floor for a longer, more complex, and for me exhausting conversation.

To give you a quick example, my back surgeon wrote me a note for school, work, etc. that stated if I needed to take a day off, I was MEDICALLY CLEARED to do so. He knew my story inside and out and knew that while I didn’t need to go to the hospital every time something happened, I needed to be aware of my limitations and know when to rest. But guess how far that note actually goes in the real world?? You would think I handed people a handmade sticky note to get out of something. *Insert facepalm here*

I could go on, but let’s get back to the main point. This pandemic stopped me in my tracks and when it did, everyone thought I was overreacting… and it took me a while to see why. The people who thought I was overreacting, don’t know the extent of my medical history – because I got really good at hiding it and not sharing about it. But I realize now that the wall I built has done more damage than I thought. While I thought it was protecting me from the eyes of judgement in others, it’s actually created a hurdle that something like a pandemic shines a freaking spotlight on.

Now, my chronic illness/disabilities are not disabling. Like I don’t technically qualify for disability. I have very high functioning and controlled chronic illnesses. While I’m thankful and grateful for that fact, it’s also extremely frustrating. While I need to be vigilant and know my limitations, to the outside world, I look like a healthy young adult.

So, I’m no longer hiding. In a way, this is a step out of my comfort zone that is terrifying, but I also know that a lot of good will come from this. Not only will I be more open with my life {the good and the bad} but I’ll also be more free to share life from my perspective – which is filled with beauty and joy! Trust me, it’s not going to be doom and gloom. If you know me, you know I don’t dwell on that kinda stuff. I don’t give a voice to negativity. What I want to do is bring light and awareness to my struggles. We all have a voice and this one is mine. I’m not going to silence my voice for fear of what others will think of me. Someone out there needs the story God is writing through my life.

In a time where we’re all required to wear masks to protect ourselves and those around us, there’s a mask I’ve been wearing for far too long that I can no longer hide behind.

So here I am. Sharing my story and encouraging you in yours. I hope you’ll stick around. I’m cheering you on every step of the way.

With so much love,

Lauren K. ❤