(Invisible Illness Thread)
If anyone looked at me, they'd see a relatively healthy 30 year old.

What they don't see is the 30% survival chance I had as an infant,

the 3 heart surgeries,
3 abdomen surgeries,
1 eye surgery
and various other medical related issues

(cont)

I spent more time in the hospital during my first few years than out.

And even after I was declared "medically healthy" at the age of 4 (whatever the fuck that means), there we still annual check ups to the doctor's each year to make sure I didn't have a relapse (cont)

There were talks when I was 12 about refining the way my heart operated because of the potential possibility some day of functionality breaking down.

That thought terrified me. My first real memory is waking up during my eye surgery screaming for my mom.

I was 4.
(cont)

They opted to continue to monitor instead, only doing the surgery if they absolutely needed to.

I had asthma as a kid, so bad that every morning before school I was hooked up to a breathing machine that administered medicine.

I don't have to use an inhaler today (cont)

When I was 22 I got into a really bad car accident. I was temporarily paralyzed from the waist down, my right had was broken. I spent the better part of 6 months relearning how to walk and getting functionality back into my hand.

I consider myself very luck (cont)

I still have complications from that accident. I can't drive in a car for more than a few hours without getting horrible back pain, my right hand is probably at 85% functionality (thankfully I'm left handed) but I had to buy a vertical mouse to help combat stiffness (cont)

When I was pregnant I had to go back to physical therapy because my right leg kept giving out on me because your hips realign themselves when you are pregnant.

Doctors were concerned that I'd ever be able to carry to term because of my medical history. (cont)

Turns out they were right. I went into preterm labor at 22 weeks and we lost our son.

Afterwards we found out I had a funky shaped uterus (not the medical term) that was just another mid-line birth defect that I didn't know about until then which meant my cervix was weak (cont)

My second pregnancy, with our daughter who is 4, we had a csection scheduled and I wasn't going to be permitted to go to full term because of everything we had learned during the first pregnancy.

Steroid shots in my ass every week to keep my hormone levels up too... (cont)

I also have minor scoliosis in my upper back from a childhood of tiptoeing (unrelated but also important).

The past 30 years have been A LOT. I am thankful and grateful to make it 30 years old when I had a 30% survival chance at birth.

(cont)

And you are probably thinking what is the point of this post? What is the point of telling you all this stuff about my medical history?

I. Look. Healthy. And I say "healthy" with the biggest quotation marks every.

The vignette is a lie. (cont)

I think my husband put it best "healthy but fragile" which means that I look like your average healthy 30 year old but I know that my health can easily be taken from me if the right buttons are pressed.

And those buttons have been pressed in the past (cont)

My immune system isn't the greatest, I get sick easier than most and for longer.

When I had H1N1 back in 2009 I was bedridden for 2 months.

When I had walking pneumonia between my pregnancies I had to go back on my inhaler because I couldn't breath. (cont)

So in a world currently dominated by a global pandemic that is respiratory in nature but also attacks all the other systems of the body, I'm going to be as cautious because I've had a taste of what happens when my immune system gets KO'd.

(cont)

And yes this whole thread is a very oversimplification of my medical history. But that's not the point.

The point is that you can LOOK healthy but you really aren't. Chronic illness and disability isn't something that has a one size fits all perfect look. (cont)

Like all humans we all are different and that applies to both chronic illness and disability. People have good days and bad days.

And so I ask you all to be kind and not to judge someone when they LOOK healthy but talk about these things that do happen to them. (cont)

As for me I've never considered myself chronically ill or disabled. I've never felt comfortable claiming either of those labels. And I don't know why?

Perhaps it was me buying into the "looking healthy" part of this thread myself... I dunno. (cont)

What I do know is that I wouldn't be here today if the people who cared for me, my parents and family and even teachers, didn't look out for my health growing up and I didn't take constant vigilance to make sure I stayed "healthy" as an adult. (cont)

If you've read this thread all the way down to the bottom, thank you for sticking with me. I hope that sharing my history as I have, helps people understand a little bit better about the "perception" of health and how those those perceptions can breed a false narrative. (end)