Frustrating things about being chronically ill

The most frustrating things about being chronically ill – Toni Bernhard, JD | November 22, 2017

This piece focuses on frustrations that are unique to those with ongoing health issues.

I’ve experienced all of them as a result of being chronically ill with a debilitating illness that settled in after I contracted what appeared to be an acute viral infection in 2001.

Here are nine things I find most frustrating about being chronically ill — in no particular order of intensity; that depends on the day!  

1. The monotony of symptoms.

Most people I’ve met online report that their day-to-day symptoms remain relatively unchanged.

In my case, I’m never symptom-free. Even on a “good” day, I awake with low-level flu-like symptoms and slowly deteriorate as the day progresses.

I’m lucky that way because there are times when I can be pain-free as long as I’m lying down.

Also, my doctor is still prescribing me opioids and sometimes they work well enough that I’m almost pain-free as long as I don’t move too much or too little – and haven’t moved too much or too little the previous day either.

2. Having people continually diagnose me. Although I know people have the best of intentions, to be honest, it’s frustrating

After more than 16 years of illness, I’ve had every test, so the odds are extremely high that the illness someone is suggesting I have is one that’s been ruled out multiple times, by multiple modalities.

Having a connective tissue disorder, I’m lucky enough to have a very clear diagnosis that explains my symptoms.

Several people have suggested collagen supplements, and then I have to explain that just because you put something in your stomach doesn’t mean it will be incorporated into your body’s structure. I don’t have a collagen deficit, I have plenty, but it’s defective.

3. Having to be on a rigid schedule that rules out socializing at the best times.

I can’t go out to lunch with people because, sometime between 11:30 a.m. and 1:00 p.m., my body collapses in debilitating fatigue and I have no choice but to lie down and try to nap.

Dinner parties are out of the questions, as are evening concerts (I’ve tried to find daytime concerts, but they’re a rare breed).

 

4. Waiting “in chairs.” I learned this term from the TV show ER. I’ve had many a wait “in chairs,” both in doctors’ offices and at labs or other test facilities.

it’s frustrating because I never know if the wait will be five minutes or over an hour. 

And if I’m seeing a doctor, the wait is in two parts.

Part 1: Waiting in the reception area with everyone else who’s there to see a doctor.
Part 2: Waiting in the exam room for the doctor to come in once I’ve been escorted back.

5. The invisibility of it all. Except to my closest friends and family, I don’t look sick.

6. Cabin fever.  

7. The cost. Even if people have good health insurance, many treatments aren’t covered or are only partially covered.

In addition, chronic illness brings with it a lot of hidden costs. For example, before I became housebound, on days when I was at work, my employer paid to keep me warm in winter and cool in summer. Now I pay … and it’s not cheap.

8. Getting people to understand that I’m sick, not stupid.

Other people have shared with me that this frustrates them too. We don’t want to be talked down to as if we’re mentally deficient. We’re sick, not stupid. I’ve written about this before: it’s called infantalization. It’s frustrating, and it’s sad.

9. Seeing all the stuff that needs to be done around the house and yard, but not being able to do anything about it.

windows getting gray

rugs getting fuzzy

countertop edges dirty and creeping inward

Picking up an object that’s been sitting on a shelf leaves a painfully obvious dust-free silouhette of it.

Author: Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, and How to Live Well with Chronic Pain and Illness: A Mindful Guide. She can be found online at her self-titled site, Toni Bernhard.

Original article:  The most frustrating things about being chronically ill – Toni Bernhard, JD