I hate the social stigma of this illness. Having been pretty house-bound for the last 5 years (I say "mostly" because I've been able to go out for short outings), I've been able to shelter myself from dealing with the social complications of having a chronic illness and having chronic fatigue syndrome (the cruelest name anyone could ever give an illness) in particular.
When I started this PhD course I tried to go to every class the first week rather than deal with the consequences of "standing out" by having to leave. Then I realized I'd have to either make some adaptations or quit the course (because I was getting sicker).
Thankfully the profs were very willing to let me attend the more important parts and leave early frequently, skipping the occasional day when needed.
So I was able to make it through (tomorrow's the last day!)
What have the costs been?
1. This whole week I've been crashed. I mean I feel SO ill and awful. Not just fatigued but also very very fluey and gross. And my sore throat and chest ache are worse, I have increased tremors and muscle twitches etc. etc. If this weren't the last week I would quit right now.
2. I've had to deal with the social awkwardness of leaving class, missing class etc. Today, for instance, when I had to leave, someone suggested it was because I was tired (most people don't know more than the fact I have "health issues"). This person does know it's CFS but obviously thinks it's about being tired.....NOT about being sick (for me the two are inextricably linked). She was also surprised when I mentioned I loose weight whenever I crash. (I've lost 7lbs over the course of this month). She thought people with CFS gain weight. I said that some do, but I also know several others who loose it. For me, it's because I feel SICK. I mean who feels like eating when they have influenza? (I use the comparison because my CFS crashes are a combination of exhaustion, malaise and sickness - similar to my past experiences having influenza - and influenza is something most people can relate to).
I just don't want to have to deal with the stigma of this illness. Almost everyone (in my experience) assumes it's less severe than it is, that it's mostly about being tired (and they think of tired in relation to the tired a healthy person feels), and that motivational/depression issues are involved....
The stigma of having CFS is terrible. I have had similar experiences to the one you've described...even with family members. It stinks. I am still cautious about how I discuss CFS with people because most jump to conclusions as soon as you tell them the name of your illness. Like you said, they think it's all about being tired and nothing else. I often start by describing my symptoms first, then I reveal that I have CFS. Unfortunately, this technique doesn't always work, and some still have their weird ideas about the disease. All we can do is keep educating people.
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