Why sufferers look mostly normal:

With EDS (Ehlers-Danlos Syndrome), or ANY lifelong chronic pain condition, we look 'mostly' normal. This is because:

We are BORN with EDS. We have this genetic condition our entire lives. There is NO cure.

EDS results in LOADS of symptoms which ARE extremely crippling.

As we are born this way, pain/major discomfort/multiple crippling symptoms etc.. is ALL WE KNOW. We DON'T know ANY DIFFERENT.

We CAN'T stay in bed all day, all night, forever. We still have to get up & do things throughout the days & nights.

We CAN'T be miserable ALL the time.

Medications help a LITTLE to take the edge off the symptoms. But we are still & will always be in pain that non sufferers can't even comprehend.

Over the years we adapt to forever changing levels of pain.

We do our best to HIDE our true bad moments from those we care about. We don't want them to worry/freak out etc...

Most in our lives don't see our flare up's as we self isolate during these times especially.

We may take up things that work to alleviate our symptoms as much as possible. Such as, I'm a Reiki Grand Master who's into aspects of Wicca as well.

We use mobility aids when needed, so you may see us use crutches/wheelchair etc...

We use i.e. Essential Oils/muscle rubs/pain relieving patches etc...

We HEAVILY limit our trips out & about. We crash/suffer in our alone time at end of the day.

You can't always see pain.

Some conditions, such as EDS, are known as invisible conditions/invisible disabilities etc... Such as PTSD (another condition I have). Not all 'wounds' (physical/mental) are visible.

We don't really sleep all that well. If, like me you live alone (by choice for me), then that's not seen by others.

I liken my constant pain etc.. as:
Hulk is driving a steamroller over my lower back, back & forth, 24/7/365.
Thor is bashing every bit of me with his hammer.
Wolverine is using his claws & wrecking me all over, all the time.
Occasionally I have an adult Elephant putting ALL it's weight on my chest. Making it hard to breath & resulting in intense agony in my chest.
Cyclops is using his 'eye beam thing' to burn into my eyes. Especially when my Antihistamines have worn off.
Hip & shoulder ball & socket joints are constantly grating against each other.
Etc...

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"We don't fake being sick, we fake being well".
You don't see all the above. As we still (& have to) smile/walk (sometimes unaided)/chat/get up everyday/cook/go grocery shopping/accept deliveries etc... By the time your my age (I'm 44 at the moment), you've done this forever allready, it's second nature. Over the years we become EXPERTS/PROS at hiding our pain/discomfort & going about our day/nights as normal.

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If your a healthy person/non sufferer of ANY chronic pain type condition/doubt were ill etc.., try to think of the most worst pain you could ever imagine & times that by 100. Imagine being in that pain/discomfort 24 hours a day, 7 days a week, 365 days a year. You'd be miserable for sure, mentally drained etc... It would affect your mental health.

PLEASE bear this all in mind if you have someone in your life who's been diagnosed as chronically ill in any way. Whether it's EDS/Fibro etc...

We ARE life long ill. We fake the smiles etc...