The Chronic Illness Advice That Could Quite Literally Kill Me


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?” or “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 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.

Even patients with the same classification of illness might not understand the full spectrum of their own disorder. For example, there are actually four different types of Lupus and hundreds of different symptoms.

It might destroy the kidneys of one person, but for someone else with the same disease, his skin might be affected instead. Each of these parties may never understand what it feels like to be in the other person’s shoes, despite being diagnosed with the same disorder.

I’m sure 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, what you do on a daily basis or the specifics of your disorders.

They dispense advice for exercise but are not there beside you in the mornings when you’re struggling to sit up in bed. Or maybe you’re 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 could, quite literally, increase the risk for blood clots that could kill me (hence the title of this piece). 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 while quinoa in itself does not contain vitamin K (the vitamin which helps with blood clotting in a normal person but must be controlled in APS), 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?

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, and 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, and I smile, nod and meditate on it whenever someone comes along and does just that again. I try to listen — perhaps they actually do have something new 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.

Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please see a professional before starting or stopping a diet regimen. 

Related to Antiphospholipid Syndrome

LED Billboard in Time Square of WNBA Player Jewell Loyd

WNBA Star Jewell Loyd Shares Her Dyslexia Story on Times Square Billboard

WNBA star Jewell Loyd’s face is plastered on a 32-story, three panel LED billboard in Times Square for one purpose: to tell her story about living with dyslexia and to encourage others to do the same. The billboard is a part of the Share-Ability campaign by Eye to Eye, a mentoring group for and by [...]
young boy looking out window

When Advocating Becomes Bullying in the Autism Community

As someone on the autism spectrum, I definitely consider myself to be a major self-advocate. I truly love sharing my experiences. My hope is that others can take what I’ve been through and apply it in a way that may help someone else on the spectrum. Sometimes it can be difficult to be an advocate. I [...]

To People Who Ask How I Can Have Such a Good Attitude With Chronic Pain

Over the past 12 years of my devastating diagnosis of irreversible nerve pain that will in fact get worse with every additional surgery I have for hydrocephalus, I’ve gotten this question a lot. “How can you have such a good attitude when you have so much stacked against you?” I think the first thing I would say to that [...]

The Many Challenges I Faced to Get an Education With My Cerebral Palsy

Since I was a little girl I always felt I was carrying a label on my forehead, like an item on a shelf. Back in my birthplace, the Dominican Republic, once I stepped out of the door, the label “cerebral palsy” became visible to others because of my physical appearance and the way I walked, [...]