They just don’t get it – How to explain FMS/CFS
Posted by Kelli on January 21st, 2010
They just don’t get it
How to explain chronic fatigue syndrome & Fibromyalgia to friends and family
By Kelli Ellis
Not having support from your family and friends will put a strain on these relationships impacting your stress level which can affect greatly both negative and positive on your health. Explanations need to be simple and straightforward. Tell someone about fibro without all the jargon so that healthy peoples eyes don’t glaze over two minutes into a conversation. You do not have to explain in extreme detail to produce an accurate picture or evoke an appropriate response.
Without a good explanation many people perceive persons with Fibro & CFS as not being sick but to be thought of as “lazy,” “a hypochondriac” or a “whiner.” We are none of these.
Here are several descriptions:
- “You know, when you work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even get up? Well that’s how I feel. Only it does not go away.”
- “It is similar to working in the garden for two days all day as well as the flu, except that it does not go away.”
- “Fibromyalgia is like arthritis in the muscles.”
- To my 10 year old niece I said, “It’s like when you’ve played all day and you play so much that the next day you are tired and your muscles are so sore they hurt and it’s kind hard to get out of bed – it’s like that, but it’s every day, not just one day.” This, a child, understood, but her mother couldn’t.
What healthy people need to realize is that, we don’t want to be this way and if we could change it, we could. Would I trade living day after day in pain & exhaustion, taking seemingly limitless amount of medications for a healthy body but a 10 work day, 6 days a week with no meds?? God! Yes!
While we may “look” healthy, that does not mean we are feeling healthy. For women, makeup can hide a multitude of sins, including pale skin, tainted skin colour, bags under the eyes, and a general lackluster. Clothing choices and the way one presents oneself may no be for show, but for need. I may not use my cane cut it would be too painful in my shoulders to use it, but it does not necessarily mean I feel well.
Well meaning friends and support people have said “I’ve had that too!” And they may have, for a few hours, waking up improved the next day and well the day after. But it truth, No, she or she has not. They have bouts of being tired or sore from whatever over exertion they experience. They do not deal with the chronic day after day extreme fatigue, pain and many other accompanying symptoms and syndromes. They think think they know because of one day’s experience – they don’t.
There are some who believe that because we with FM do not follow their well meaning advice, that it is our own fault we are sick. Horse-pucky! Don’t put that BS guilt trip on anyone, let alone a fibromite. The last thing a person with FM needs is to feel blamed for being ill. It is not our fault.
Some tips when discussing fibro and what it is: Be honest. Beware of your audience – what a 10 year old understands, an adult may dismiss. Do not use excessive jargon – the biggest word should be fibromyalgia not neurotransmitters. Know what symptoms you what to emphasize. Recognize how much, if anything, they want to learn.
For those who would be interested in further explanations, there are many resources around. To start, I recommend the “Spoon Theory”.The author has lupus, a sibling condition with many overlapping symptoms.
Another resource is “the Letter to Normals”.
If you have any other suggestions, please feel free to post them here or email me.
Oftentimes people are told what not to say. This is a great help in giving them an idea of what to say! Feel free to add your own ideas in the comments below. We’d love to hear them!
These lists are compliments of National Invisible Chronic Illness Awareness Weekat 
