by Stashia Jeanette

The Truth About My Health: Chronic Illness, EDS, SMA Syndrome & Fighting to Be Heard

The Truth About My Health: Chronic Illness, EDS, SMA Syndrome & Fighting to Be Heard

There’s a version of me you see online.

And then there’s the version of me that’s been fighting behind the scenes for my entire life…

This is that version.

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Where I’m At Right Now:

I recently saw my GI doctor, and we’re moving forward with what’s already been shown on my CT scan: duodenal distension consistent with SMA syndrome.

On top of that, I’m dealing with symptoms like:

  • Getting full extremely fast
  • Nausea when eating normally
  • Pain if I eat too much too quickly

So right now I’m not eating like a normal person.

I’m surviving off slow, controlled intake, literally sipping high-calorie nutritional drinks over an hour, multiple times a day, just to avoid my body rejecting them. 

That’s my reality currently.

The Test That Was Supposed to Help… Didn’t:

Let’s be real.

That X-ray test was a mf mess.

I went into it:

  • Severely dehydrated
  • No food or water for days
  • Extreme nausea

Then they handed me iodine to drink, which tasted like straight gasoline (or Everclear if you’re privvy lol), and expected me to keep it down.

I couldn’t.

So the results were basically useless.

And this is part of the problem.

What People Don’t Understand About Rare Conditions

It’s not just the illness, but it’s the constant fight to be believed.

When you have rare conditions like:

  • SMA Syndrome
  • Nutcracker Syndrome
  • Ehlers Danlos Syndrome

You’re not just dealing with symptoms.

You’re dealing with:

  • Misdiagnosis
  • Dismissal
  • Conflicting information
  • Medical gaslighting

And you have to advocate for yourself… constantly.

That alone will break most people.

The Weight Loss (Let’s Clear That Up):

I already know what people are thinking.

So let me say it clearly:

  • I am not on Ozempic
  • I am not starving myself
  • I am not doing this on purpose

My body physically cannot handle normal eating right now.

That’s it. Period. Case dismissed.

The Part People Don’t See:

This isn’t new for me. This has been my entire life.

Surgeries. Near-death experiences. Constant health battles. Abuse. Manipulation. Lies. Deception.

At one point:

  • Multiple surgeries per year
  • 15+ surgeries total
  • Fighting just to function

And I’m going to say something people don’t say enough:

I’m tired.

Not quitting.

Not giving up.

But tired of always having to be strong and constantly fighting.

The Reality of Becoming Your Highest Self:

Everyone wants to talk about ascension and becoming their highest selves.

But no one talks about the cost.

If you’re truly on this path, you will be:

  • Tested
  • Pressured
  • Broken down
  • Forced to face everything

This path is not easy, it’s not meant to be, and not many will make it.

And it’s definitely not for people who tap out when things get hard.

Don’t Envy the Highlight Reel:

If you see someone thriving, understand this:

You didn’t see what it took to get there.

The pain.
The frustration.
The battles behind closed doors.

So if you’re not envious of the struggle, then don’t be envious of the outcome.

What’s Next?

Right now, I’m waiting to:

  • Meet with a vascular surgeon
  • Possibly go through more testing
  • Decide next steps

And I’ll be honest:

I don’t want another surgery unless it’s absolutely necessary.

I’ve done enough.

For now, the focus is:

  • Maintaining weight
  • Managing symptoms
  • Letting my body rest

And trusting that things will shift, like they have before.

Final Thoughts:

If you’re going through something right now,

(Especially in that March–May window where everything feels heavy)

Just know this:

You’re not alone.

And you’re not crazy for feeling overwhelmed.

We’re going to get through it.

One step at a time.

#ViiSquad

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