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Advice That Could, Quite Literally, Kill

Advise that Could, Quite Literally, Kill | A Chronic Voice

One Size Does Not Fit All – Doctor’s Perspective
When it comes to autoimmune disorders, one size does not fit all. Even our doctors deal with us on a case by case basis:

“This drug works for him, but can she tolerate it?”

“It isn’t doing anything for her at all, even after six months.”

“This drug is superb for joint aches caused by Rheumatoid Arthritis! But your white blood cell count has been flaky from Sjögren’s Syndrome, so we’ll have to stop using it.”

“This is the latest drug that has worked for almost all our patients, but it costs $10,000, and there is no guarantee that it will work for you, too.”

It isn’t quite like a cough or a sore throat, where you go to the pharmacy to get the same prescription as everyone else.

One Size Does Not Fit All – Patient’s Perspective
Even patients with the same illness might not understand the full spectrum of their own disorder. For example, there are actually five different types of Lupus, and hundreds of different symptoms.

It might destroy the kidneys of one person, but affect the skin of another. Both of them have the same disorder, Lupus, yet they may never understand what it feels like to be in the other person’s shoes.

Personal Pet Peeve
I am sure that almost everyone with a chronic illness has a pet peeve. Mine, hands down, would be health advice given by acquaintances who have no idea who you really are as a person. They don’t know what you do on a daily basis, or the specifics of your disorders.

They dispense advice for exercise, but are not there beside you when you are struggling to sit up in bed. Or maybe you are already doing more exercise than them, despite your pains!

I’ve had many people enthuse about magical beans and seeds, or suggest I go vegan. This can be little tricky when one has APS (antiphospholipid syndrome), a disorder where your blood has a tendency to clot. The blood thinners I take require close monitoring of the foods I eat. Variations in my diet can increase the risk for blood clots that could kill me (which is what the title of this post meant). I once ate a plateful of quinoa and woke up to a giant bruise covering half my arm.

Who knew that a non-green food would be that dangerous? I discovered that quinoa in itself does not contain Vitamin K (an important vitamin that helps with blood clotting, but can be dangerous with APS). But the shell enclosing it contains saponins, which triggers blood thinning instead. Anyway, who knew a plate of organic, healthy stuff wasn’t so good for me.

Coming to Terms with it
These days I am trying to understand the perspective of a healthy person a little more. I put myself in their shoes and ponder, “How could they possibly understand? I can’t blame them for that.”

My psychologist has also played a key role in my journey towards psychological healing for the past year. She presented this issue to me in a different light – while you are not their number one concern, their thoughts are still coming from a good place, and their intentions are not malicious.

This thought calms me down, so I smile, nod and meditate on it whenever someone comes along and does it again. I try to listen – perhaps they actually do have something new that I could consider. If not, I try to let the comments slip off before they permeate the barrier of my mind to trigger anger – or maybe I am just getting older 😉

    For More Insight:

  1. Visualize the Effects of Lupus on the Body (infographic & article on Healthline): http://goo.gl/f16E94
  2. How to Offer Advice to Someone with a Chronic Illness (insight from Febuary Stars): http://goo.gl/Qe0bm9
  3. Rheumatoid Arthritis Support Network: https://goo.gl/lsJbKx
  4. Why You Should Never Ask ‘Have You Tried…?’ (article on Huffington Post): https://goo.gl/Lt7n5J
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When it comes to autoimmune disorders, one size does not fit all. Our doctors deal with us on an individual basis and being systemic, symptoms vary widely. | A Chronic Voice

2 comments

  • Great post and very valid points. I particularly like the bit when you said the people who advise you to exercise aren’t there to see you try to sit up In the morning– so very true. The people advising often don’t even see part of the picture!

    • Yup. Giving advise when you hardly know anything about it makes you look stupid at best, and kills somebody at worst 😉 Thank you for taking the time to read…keep up with raising awareness through your own blog!

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