Our Stories

Our Stories

This page is for you dwellers to finish. Invisibly disabled people's stories interest all people. It can be on any aspect of living with unseen chronic conditions that adversely affect your participation in life. It can be funny or sad or instructive - or whatever. You'd be surprised how much your story can inspire someone else. Either another dweller who deals with similar issues. Or an observer who may then notice someone around him and help out. Maybe a tired-out caregiver who needs encouragement.

Please share your story by contacting us. You can write it yourself, and if it needs editing for our purposes, we’ll get in touch with you about suggested changes for your approval. Or, you can send us the facts and we can write it, again subject to your approval. Aim for 400-700 words, although some circumstances require more words to adequately convey the situation.

Ava’s Story

Whose Story?

Your Story?

“In the depths of my sickness, I never imagined that I would achieve any semblance of a normal life again.  All I could see was pain stretching out endlessly into the distance.  At times my strength of will faltered when I faced that long road of pain.  My husband would find me weeping and I would tell him, “I can’t do this anymore.”  I wasn’t suicidal – but I wasn’t that far from it, either.”

So begins Ava as she describes a months-long severe exacerbation of her Lupus. She concludes with steps she took to find some relief and improvement. Read it on her blog, My Meena Life.

As Ava tells her story, she includes observations about interactions, or lack thereof, with others. If you’re an observer unfamiliar with invisible chronic illnesses, I highly recommend reading her story.

Stay tuned!

I'll be adding more stories as the weeks/months go by. Depends on my strength.

Dwellers, I hope you find encouragement in reading other's experiences.

Observers, I trust you'll discover more of dwellers' challenges.

You can add your story to this page.

Just contact me.

300-500 word story you've written. 

Or info and I can write it.

Or a story about your life from your website. I (or you) can write an intro, and I'll link to your site.

Ruth’s Letter to Chronic Fatigue Sydrome

Dear chronic fatigue syndrome,

I need to get a few things off my chest.

First of all, you need to change your name. You have a confusing name. Life with you involves much more than just feeling tired all the time. Plus, your name doesn’t even have capital letters, but your acronym has extra capital letters: ME/CFS. The name needs to go.
Click here to Read More


Is it because of you, or despite you? Or a bit of both? You really are an enigmatic character, chronic fatigue syndrome. Keenly unwanted and truly awful, yet at the same time, you’ve enriched our lives…

I’ve got it! You are a bit like compost. Smelly, disgusting, putrid, rotting, nutrient-rich compost. A reminder that new life can sprout from unpleasant sources. Compost…

That’s your new nickname. I like it better than your real name.

Regards,

Ruth

© Ruth Johnston. Read more of her story at https://fruitfultoday.com/about-me/

 

Kirsty's Medical Adventures

My friend’s medical journey through her invisible disabilities reflects the experiences of too many people with hard-to-diagnose conditions. Note: people’s problems differ, so their medical journeys may be easier or even more difficult.

I’ll call my friend Kristy. She majored in Nutrition and planned on pursuing a Master’s in Wellness or Sports Nutrition. Four years previous to our meeting, she ran a women’s gym. So, she was an active, healthy woman in her forties. By the time of our meeting, she was overweight and disabled. Even kneeling to garden caused injuries taking months to heal. This is her true story, albeit long. You can feel her emotions and frustration throughout.

First symptoms, many doctors

Click here to Read More

Addendum

sunset storms

Is this good news - or more trouble?


Kristy sums up her experiences for you.

I have my results of biopsies now. It showed scleredema but not scleroderma. Very strange. The info says it is most likely related to a type of cancer hidden somewhere. It will continue to get worse, I guess, even if we find a

cancer and fix it. Now I have been asked to find a cardiologist, endocrinologist, respiratory doctor, gastric doctor, and heaven only knows who else. An oncologist in the end, when or if we ever find anything. REALLY!?!  They tell me that all the other weird symptoms are not related so this is just another confirmed diagnosis added to the list of 20 plus!

I think my brother is right. A heart attack will get me first....just from the stress of it all!

They suggested I go to a major University like the Mayo Clinic or John Hopkins or something. But why? They won't listen because I am overweight and at risk for diabetes. I don't think I will get any help until I manage to get this weight off.

 

Kristy’s physical challenges:

Help me, please!

Help me, please!

  • Anemia primary care.
  • Sluggish blood confirmed by Chinese acupuncturist. Unknown reason.
  • Thick arteries with no plaque confirmed by cardiologist. Unknown reason.
  • Surgeries for carpal tunnel but still have painful stiff hands even though the carpal tunnel was fixed.
  • Nystagmus found by eye doctor and confirmed by neurology.
  • Dysphagia confirmed by testing.
  • Sensory neural hearing loss confirmed by ear doctor.
  • Muscle weakness not related to my back. Self-reported but confirmed by a physiatrist (Physical Medicine and Rehabilitation doctor).
  • Bladder pain and an inability to empty my bladder, self-discovered then found in medical text.
Click here to Read More

All these problems individually can be summed up as a lot of stuff wrong. Together, what??? Now I just need one of these doctors with enough compassion and courage to find it. I am not a doctor. I don’t count.

See Kristy's advice in her post of 2/10/17.