Navigating the Storms

Thriving in the Midst of Invisible Disabilities

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.

Medical Stories

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.

Secondly, my husband and I most definitely have not enjoyed your company over the past two years. You moved in uninvited, for starters. And at a most inopportune time: two weeks before our second baby was born. How rude, taking my mobility away at such a time! Caring for a newborn and toddler is demanding work. Our kids are now 2 and 4, and they don’t know life without you…

Thirdly, I don’t appreciate your invisibility. Sneaky and sly, you evaded medical detection for quite some time. I knew something was wrong, but had no name for my debilitating symptoms. Was it post-natal depression? Was sleep-deprivation making me this way? Terribly confusing. So even though I dislike your name, I’m sort of glad you at least have a name! Now we know how to treat you.

Lastly, you present me with a dilemma: I’m mysteriously contented. More contented now than I remember being pre-illness. Bizarre. Paradoxical. But true… I’m being forced to accept a much simpler life. Unfettered by my old “friends” – busyness, perfectionism and over-achievement – my spirit is thriving.
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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

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Addendum

sunset storms

Is this good news - or more trouble?

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 sums up her experiences for you.

 

  • Kristy’s physical challenges:

  • Anemia primary care.
  • Sluggish blood confirmed by Chinese acupuncturist. Unknown reason.
  • Thick arteries with no plaque confirmed by cardiologist. Unknown reason.
    Help me, please!

    Help me, please!

  • 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.
  • INFLAMED tight skin confirmed by pictures, still tight and getting tighter.
  • Thick puffy fingers that are beginning to harden.
  • Unnaturally pigmented skin.
  • Loss of hair on legs and arms.
  • Raynaud’s of feet and hands confirmed by foot doctor.
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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.

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