Mars 👩🏻‍🦽‍➡️

Welcome to Chronically Mars’ Blog!

Welcome to my little corner of the internet where I blog about my personal experiences and struggles as a young disabled person. I want this to be a safe space for people who need to feel like they’re not alone.

Quick Overview:

Intro:

Pen-Name: Mars

Age: 20

What conditions do I have?: hypermobile Ehlers Danlos Syndrome, Arthritis, POTS

Do I answer questions about my condition/aids: Yes! Questions are encouraged!

Today is Black Friday and while Black Friday isn’t as big of a thing as it used to be, from now until the end of the holiday season PLEASE be kind to your retail workers. As someone who still goes into work with my chronic pain at a level 10+, I you never know what someone is going through when they go into work that day. Please be patient and kind to workers this holiday season.

You should not be in debilitating pain to the point you cannot move after only 4 hours of activity. (This is counting taking regular breaks)

I thought everyone was extremely tired the next day where they couldn’t even move their joints properly the next day.

If you feel this way, I promise your pain is valid and you have every right to ask to ask for help and use aids that can help you day to day even if you are undiagnosed.

These are simple questions but they fill my heart with joy- because you’re telling me you care about me?? You care enough to remember to ask me those questions?

“Let me check if they’re accessible”

I hate that I never know when my disability will get so bad it prevents me from working and that’s terrifying for me to think about. Especially when so many people count on me.

Sometimes it scares me that I’m so young but it’s so hard to work with my health conditions sometimes, as is I never rest because resting while being chronically ill isn’t resting, it’s pain/symptom prevention.

Today my job had a Halloween event and I worked today. I had so much fun dressing up, giving out candy, goofing off with my friends. Now my body is paying the price for it.

People think “it’s not that bad! You have some bad days what’s the big deal? Aren’t you used to it by now?”

No, it’s the constant flip flopping of pain and never knowing when it’ll get bad that you will never get used to.

There are days I forget I even have pain because it’s so low only for the next day my body crashes and I can’t get out of bed because I overdid it.

It’s the not making plans in fear that you’ll have to cancel them because the pain is too much even though you were fine 20 minutes ago.

It’s the fear of using mobility aids because if you don’t use them often, you’re faking it. But if you don’t use them at all, you’re fine and you’re being dramatic.

I’m afraid I won’t be believed when I say I’m in pain. Get told “You’re too young to be in pain! Wait until you’re my age”. Told I’m too young to have arthritis so it can’t be that. Afraid of my doctor saying that I’m “exaggerating” my symptoms. That I should try doing X,Y,and Z before getting an aid or help. That it’ll be written off as anxiety. That I should lose weight. That I should try to exercise more. That I will be dismissed because my labs came back fine.

Then something has to change. It’s not just one doctor, it’s multiple. I should not feel like giving up on getting a diagnosis is easier than getting help, WHEN I WAS 14.

———

But I also get told I’m just looking for sympathy and attention and I should put more effort into my appearance when I actually dress how I’m feeling because it makes you uncomfortable you actually have to acknowledge I’m not doing okay?

My list:

Liquid IV - 6/10

Gatorlyte / Gatorlyte zero - 9/10

Wishlist:

Buoy drops

Body Armor

From elementary school to my last years of high school I was an overachiever, I over worked myself to be the best student. Academic success is something I craved because it validated my hard work. After my disability forced me to stop everything I felt lazy. I felt like I wasn’t doing enough, my grades started slipping, I needed to take more breaks than normal and I felt guilty, and it’s still something I struggle with as an adult. Taking a break to prevent burnout and flares is not lazy or procrastination, it’s self care.

Me:

- period is starting

- weather changing

- rain

- too cold

- too hot

- standing for too long

- sitting too much

- not drinking enough water

- being too active

It doesn’t mean we’re not in pain, it doesn’t mean we can do stuff just because we did it yesterday, it means we are trying not to make you uncomfortable when we’re in the most severe pain imaginable but have to put on a straight face or else we will break down completely. Masking takes up energy we don’t have so please be nice to anyone who is struggling.