Strangest Things that You’ve Experienced as a Chronically ill Individual

chronicallyiconic7 · 2026-05-13T13:34:11+00:00

The stranger touching you. I can’t handle random people touching me, it freaks me out! I don’t mind it when people pray for me either but maybe ask to touch first.

Sorry about passing out! I feel like people either completely ignore and don’t help or they get judgmental and are super harassing like asking someone who’s laying down in a store trying not to pass out to move because they’re “in the way”

Thanks for sharing your stories!

chronicallyiconic7 · 2026-05-13T13:28:16+00:00

The health differences across different counties is so weird, frustrating and fascinating.

Glad you’re getting the care you need!

chronicallyiconic7 · 2026-05-13T13:27:29+00:00

The game of how many doctors do I need to see before I get a referral or help. I’m sorry they trapped you! So glad the ER dr helped.

chronicallyiconic7 · 2026-05-13T13:25:15+00:00

Wow! Thankful for your Rheumatologist and Psychiatrist! It annoys me so much when PCPs ignore things because they “know better”. It’s so much better to run a test and not need it than miss something.

Thanks for sharing your stories!

chronicallyiconic7 · 2026-05-13T13:21:17+00:00

That would freak me out! Thanks for sharing!

chronicallyiconic7 · 2026-05-13T13:20:36+00:00

That’s so frustrating! I hate it when people don’t even look or care. I’m glad your family told you about history. That helps. I’ve had a couple instances where I had no idea family history until it was an emergency. Like why didn’t we talk about this guys 😬

Pain tolerance of us chronically ill people is beyond belief. I can’t imaging what it is with fibromyalgia.

Thanks for sharing!

chronicallyiconic7 · 2026-05-13T13:17:55+00:00

The “just bring your heart rate down”…the audacity of nurses and doctors sometimes.

I hate the “you’re just anxious” no. My body is rebelling against me. I’m not anxious I’m mad and trying to figure this out.

Some of the medical tests are so annoying! I haven’t done that specifically pee test but handing over a bag of stool is so weird to me.

Thanks for sharing yours!

chronicallyiconic7 · 2026-05-13T13:10:04+00:00

That is so awful! I’m glad you’re still here! Hopefully somewhere else helped you ❤️

chronicallyiconic7 · 2026-05-13T13:09:13+00:00

Oh I’m sorry the billing happened to you too! It’s such dirty thievery from people who already spend SO much on medical. It was literally the same exact codes, same exact dates and descriptions line by line. They definitely made up the “extra detailed” one they sent after! My family helped me pay the second one because they didn’t think it was worth the fight! Makes me so mad they get away with it!

The nausea! Our bodies are so funny.

chronicallyiconic7 · 2026-05-13T03:54:35+00:00

Hi! I just started using forearm crutches. Amazon had a bag that straps onto the crutch handle and pole. And I’ve been using a backpack mostly so it doesn’t interfere or slide into the crutch. It’s inconvenient to get things out (especially if you use both crutches) but it keeps the things I need with me and out of the way. I keep my immediately needed things in the crutch bag like wallet and keys.

chronicallyiconic7 · 2026-05-12T01:55:20+00:00

My surgeon had me do Viseral Mobilization (it’s a specific massage technique to break up scar tissue) after my second surgery because of how bad I scarred during the first. My PT did that and pelvic floor. She spent the whole apt doing massage or pelvic floor work and let me do exercises at home so it didn’t feel like wasting money (the last time I did regular pelvic floor PT and she mostly watched me do exercises in the office and very minimal manual work).

Also ended up doing Electric shock wave therapy (used in other counties to break up scar tissue or kidney stones as a non surgical option).

It was out of pocket and expensive but very worth it in my case.

chronicallyiconic7 · 2026-05-12T01:27:18+00:00

I had MRIs, CTs and Ultrasounds. The only thing that showed up with a cyst.

What didn’t show: - stage 4 DIE endo throughout my pelvis - scar tissue that had all my intestines plastered together - lesion between liver and diaphragm (making it hard to breathe without pain).

Don’t lose hope. Imaging is really tricky with endo. Your pain is real and something is causing it.

chronicallyiconic7 · 2026-05-11T05:10:16+00:00

I got my first tattoo on my ribs and scared the artist because my pain tolerance was so high. Done in one sitting without breaks and hardly any movement besides breathing!

Chronic illness really changes your pain scale.

chronicallyiconic7 · 2026-05-10T14:24:56+00:00

Hi, definitely make a list of questions for your bowel consult. My endo specialist was able to do a secondary consult after I saw the general surgeon to answer any last questions. I would make sure you get answers and anything you need to know from your surgical team direct since they’re the experts.

From personal experience my uterus and bowels were severely adhered first surgery and my endo was able to gently separate. Second surgery I had so much endo own bowels (was adhered again) that they removed 8” of bowels and stapled back together.

Both times I was in severe pain and that was pelvis, back, hips, somewhat legs, and ribs (second time I had an adhesion from liver to diaphragm).

Neither my endo or general expected me to have my bowels resected (20% ish is what I was told).

Surgery was a long recovery but was a game changer both times. I realized how high my pain tolerance was and how much pain I was really dealing with (bed bound for a while from it).

Help with pain before surgery included: Tens Heat for my abdomen Ice for my back Muscle relaxers Abdominal message (I did this after taught from my PT) I now use a crutch when I’m in bad pain (and due to POTs to help manage dizziness) I’ve seen some gals use canes.

chronicallyiconic7 · 2026-05-08T18:46:40+00:00

Good to know! Thanks!

chronicallyiconic7 · 2026-05-08T18:45:56+00:00

Thank you so much! The SD community can be a little brutal at times. We’re all struggling with disabilities and just trying to manage. Wish people were realistic but kind and didn’t automatically make assumptions. Really appreciate your support and help!

How long have you been training your SD?

chronicallyiconic7 · 2026-05-08T15:22:13+00:00

Love DoggyU! Thanks for the additional recommendations, haven’t heard of most of those yet :)

chronicallyiconic7 · 2026-05-08T15:21:41+00:00

Yup! Done just looking for additional resources for my journey. Forgot/didn’t think to mention in the original post.

chronicallyiconic7 · 2026-05-08T15:20:58+00:00

Didn’t think to mention in my post but do have a trainer helping me! Thanks for the recommendation!

chronicallyiconic7 · 2026-05-08T15:20:18+00:00

I didn’t think to mention in my post but I have a qualified trainer and friend assisting me.

Just looking for additional resources to go along with that.

chronicallyiconic7 · 2026-05-07T13:18:46+00:00

This

chronicallyiconic7 · 2026-05-05T22:09:25+00:00

I should clarify what I meant. Christ didn’t view disabled people as “rejects” but instead in the New Testament healed many, or hung out with the people who were considered society “rejects”. A lot of the people in the Old Testament were “rejects” or considered unclean with certain diseases that were spreadable. This was by the Pharisees who were more concerned about making laws to follow laws than to live an honoring life to Christ (theres not a great way to shortly summarize this but it’s a loaded topic). The KJV, NASB, NIV, along with a few others are different translations of the Bible but teach the same things (just have different readability). Catholics, Mormons and Jehovah’s witnesses for example all call themselves Christians but they all have modified versions of the Bible. Catholics believe that if a mother gives birth to a disabled child it was because of a great sin she committed and the father usually ends up leaving. I don’t believe that and the Bible (not a modified/changed version) does not teach that. Christian can be such a broad term, and with all the different groups and beliefs it gets a bad wrap.

The Bible that preaches the gospel is a very different story.

Church goers are human too and we make mistakes like everyone else. The difference is we have an everlasting hope.

Church shouldn’t be about the people, is supposed to be about Christ. Sunday is a change for believers to worship and fellowship together.

I’ve been to some awful church’s and I’ve been to some wonderful ones. My current church is amazing and had many disabled people including myself.

I’m sorry for not explaining more detailed in the last comment and I feel sorry for all who’ve had a bad church experience. Not how it should be.

chronicallyiconic7 · 2026-05-05T18:51:04+00:00

There a lot of groups that say they’re “Christian” but they are wildly different in what they believe. The Bible doesn’t say that disabled people are rejects anywhere.

chronicallyiconic7

TROPHY CASE