Explaining Your Chronic Illness to Others

How to Help Others Relate to Your Chronic Illness
by Ellinorianne

One of the biggest challenges for those of us struggling with Chronic Illness is that we may not "look" sick and those around us may not get how we are forced to make compromise with our lives at every turn.

For me, it has had a lot to do with work and trying to communicate to my coworkers how my Fibromyalgia affects my ability to deal with everyday tasks. The last few weeks have been rather difficult, just Tuesday I spent a good twenty minutes staring between my computer and my work trying to figure exactly what it was I needed to do. My brain fog was just kicking in, I hadn't been getting enough sleep and I was not fully functional. I probably LOOKED fine but I was not okay and had to leave early. I was almost in tears because I was so frustrated, tired and hurting.

Symptoms of Fibro-fog


The severity of Fibro-fog fluctuates from day to day, as well as from person to person. The following is a list of possible signs and symptoms:


* Mental confusion and fatigue
* Loss of short-term memory
* Inability to concentrate
* Impaired thinking
* Absentmindedness
* Inability to recognize familiar surroundings
* Disorientation
* Inability to comprehend written or spoken words
* Trouble with directions
* Short attention span (seems like ADHD; sometimes speaking over others)
* Acquired dyslexia (includes difficulty speaking known words)


Source

I was always someone who learned things quickly and able to follow directions immpecably. It was part of why I was such a valued employee, I always remembered the fine details and had a great ability to concentrate. I was a world class multi-tasker that would make my own head spin as it is now. What the hell happened?

Fibromyalgia happened. All of a sudden, I couldn't concentrate, I thought maybe I was developing adult attention deficit disorder because it was so hard for me to stay on task. I have had to start to write things down and ask people to email their requests so I would have some record of what they needed. It was absurd, who was this person? Why couldn't as easily form simple sentences and get my ideas down in written word?

Thankfully this is not all the time, the Fibro-fog tends to come and go just as the pain and fatigue do and I never quite know when I'm going to be hit by some instant stupidity, that's how I feel, just stupid and it's so hard to feel "normal".

So how do I explain such things to someone who doesn't have it? How do I explain how I have to make choices and how do I explain how simple tasks can sometimes tax me beyond comprehension?

When I try to explain to someone that it hurts to carry a mug of coffee to my office or turning the pages of a binder made my shoulder ache, I get blank stares or a lot of pity and sympathy.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.


I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.


Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.


She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics.


Little did she know how serious I would become.


ButYouDontLookSick

My life, as many others with chronic illness, has to do with choices. Do I clean the house this weekend or go to the park later with my daughter? If I choose do the first, I may not be able to do the latter.

Do I stay up a little later and still get up early for work? Will I be able to? Should I do the dishes or the laundry and which is going to hurt more? Each choice will mean I lose a spoon and by the end of the day, I hope that I'm not negative in spoons because that will mean I am going to hurt the next day, I will pay for not making the right choices. The worse is not knowing how many spoons I really have at the start of the day, so how much CAN I push myself?

Many of us, healthy or not, take something for granted in our lives and I find some people who are very healthy do take that for granted. The point is not to make people feel badly but to have them understand why you make certain choices and why their support of those choices is imperative to getting through your day. Sometimes we forgot how our health can impact everyone around us and it must come with communication and patience.

There is a list of books that might help people in your life understand and cope with your chronic condition, although most are for kids and deal with cancer.

Here are some other resources:

The Invisible Disabilities Advocate

But you LOOK Good!


But You LOOK Good! gives those living with chronic illness and pain a voice about how they feel, what they need and how others can be an encouragement to them. It is a convenient, informative way to educate loved ones about what people living with ongoing illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest!


This booklet gets to the heart of why our friends and family have difficulty with understanding ongoing illness and pain. It serves as a tool to help explain to loved ones how extreme fatigue, pain, dizziness, cognitive impairments and other symptoms can be limiting, even though the person may not "look" sick or in pain. Moreover, it gives them simple, pragmatic ways to truly be an encouragement, "What to say," "What not to say" and "Why," along with "How to help." Often loved ones are enlightened as to why their well-meaning advice is not always well-received. It is cherished by both those living with illness or injury, as well as those who love them!

The National Fibromyalgia Association

Living with a Loved One with Chronic Illness: An Interview with Gregg Piburn


Q: What is the most important thing that sufferers of chronic illness can do to improve and maintain their relationships with loved ones?


Gregg: Understand that chronic illness impacts the person's "healthy" loved ones as well. I know Sherrie's experience with The Intruder has been much tougher than mine. But having Sherrie realize it was tough on the rest of us, too, helped us band together against a common enemy, The Intruder. We became allies rather than competitors.


Q: What is the most important thing that the "healthy" partner can do to support the person who is ill?


Gregg: Don't become a stoical martyr, which many of your friends and neighbors will expect from you. It's just another version of charades and will cause you to become bitter and angry (while often sporting a plastic smile on your face). When The Intruder sees the "healthy" partner become a martyr, he knows victory is secure on the emotional and relational fronts.

There are literally hundreds of resources to help loved ones understand your own personal circumstances but the "Spoon Theory" tends to cover almost any illness because it deals with the fact that when our health is compromised, we have to make choices that others may not even think about.