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by Mary Campbell
When we are sick our confidence drops. We can lose jobs, status and money -- and we face a whole new set of problems. We learn about the medical profession, about illness and symptoms, and hopefully strategies to deal with our particular set of problems. Often the hardest loss to bear is that of loved ones, friends and family. Relationships change, sometimes for the worse ... and with illnesses like Chronic Fatigue Syndrome (CFS), lack of understanding plays a major role. We face stigma and disbelief, and in turn, that often means we doubt ourselves.
When I’ve doubted myself I’ve caused my health damage. I know it isn’t my choice to be sick, or to struggle or to be unhappy... and somehow I have to believe in that, because there are so many people out there who won’t believe me. I pace myself and try to listen to my body and mind and do what is best. Through this, I am slowly improving. I’ve come a long way from being bedridden.
I often wondered, what could I offer? What would someone see in a sick girl? When so many of my defining features were taken away ... my interests, my hobbies, my talents.
A few things have proven me wrong lately. First off, I believe it’s important to tell people how I feel... especially the good things, because so often we are quick to complain, but never compliment or thank friends, at least not to their face. So I decided to say ‘thank you’ to an old friend of mine, Katherine.
When I became bedridden in high school, and was very isolated, my friend Katherine called me every day, and told me what had happened at school, the classes, the gossip and what she’d been doing outside of school too. She was really a lifesaver, when all my other friends were - as my doctor said - ‘typical teenagers who are too self absorbed to make the effort’, Katherine would call me every day. This was my only social interaction other than with family and my doctor for months. It meant that I kept up with what was ‘cool’ and meant I didn’t lose my social skills. It meant I still felt worthy because she hadn’t deserted me, especially when all my friends had broken my heart by leaving. Talking to Katherine was often the only thing I looked forward to each day, and the only time I could smile or laugh, and even when I was so sick I had to leave after only 2 minutes, she still understood, and kept on calling me.
When my health improved I was able to ease back into ‘normal’ life and without her help that would have been immensely difficult, I would have missed out on so much, and been quite detached. Katherine did me this huge favour, and it was a huge act of kindness. We were still friends, but yet I never properly thanked her. So, on one of our phone calls (we now live in different states), as hard as it was, I said ‘thank you’ and told Katherine what it means to me, how she stood by me. She laughed and couldn’t see how momentous her actions were. All she said was it wasn’t a big deal, how she’d enjoyed talking to me. Katherine said she wouldn’t have called otherwise, and that she had fun talking to me.
This was bedridden me, this was me who had no gossip, no events to talk about, no job, boyfriend or party on the horizon, not even schoolwork to complain about. Yet still, she saw value in me.
The second story I want to tell is about someone who is amazingly open minded. I’ve had so many less than helpful reactions to me explaining my illness for the first time, that on occasion I’ve given up and presented the facade of a healthy person, and had friendships based on that lie. It’s not that I want to lie, it’s just that so many people don’t understand. They judge me, criticise me, attack me psychologically, or want nothing to do with me. Every time, it hurts, and I doubt my illness and myself a little more. Unfortunately it’s what I’ve come to expect.
It’s so hard when the first question someone asks, “What do you do for a living?” or “How is school?” doesn’t have an easy answer. Usually I try to establish a relationship first before I explain my illness, then I guess I’m hoping that the person will judge me on my personality, not my CFS. Or at least judge me in part on my personality not on the stigma.
So, as I’m sure many can imagine, it’s quite scary when I tell someone for the first time. I’m prepared for a bad reaction, but hoping like hell I don’t get one. I’m hoping I don’t lose the friendship. I’m hoping and dreaming I will find someone who is supportive of my illness. As much as I’d like to think it’s not part of who I am, it affects every part of my life and how others view me. They can see me as a sick person trying my hardest to make the most out of life. Or they can see me as someone who is sick because I choose to be, because I choose not to work hard and try like the rest of the population.
The time came when I had to tell my friend Chris I had CFS. I told him over the internet through instant messaging. I decided to send him the link ... and then I held my breath waiting for his reply.
“... ok, so I guess now is as good a time as any. Check this out: http://www.cfids.org/about-cfids/symptoms.asp.”
I waited for him to read.
“Sounds like a sucky thing to have,” he replied.
“Um ... yeah, it really is. I've had it since I was ten.”
“Bugger. Does it get really severe?”
“Um, yeah, I was bedridden for a year. The pain can be horrific, and yeah, it’s not exactly a ‘normal’ life.”
“Damn. Yeah that’s gotta suck.”
“... so I bet I've thrown you for six.”
“Lol” [laughs out loud], “a little bit :)”
My heart sank to my stomach. “Ok, so I should go.”
“Why is that?”
“Well after telling you I'm not who you thought I was... seems like a good time to make my exit.”
“No way. I don’t know half of the stuff about you, I feel privileged that you told me.”
I was amazed by his reaction. I wrote “:) ” [smiley face].
“Besides, one of the effects of my sister having cancer was I grew up round hospitals and had lots of mates that had much worse illnesses...actually a lot of them died. Kind of makes you see that a little bit of sickness means nothing next to oodles of character :) ”
I was blown away. “That's gotta be one of the nicest things anyone’s said to me :)” I paused. “Not everyone sees the world like that.”
“So you thought I would disregard all the fun I have from talking to you because of one little thing?” he wrote.
I didn’t want to offend him by saying I expected him to be prejudiced, but the truth is I didn’t know how he would react, and I was trying to prepare myself for the worst.
“Who knows. It's not an easy thing to tell someone, and everyone reacts differently.” I thought of all the reactions I’ve had, from disinterest, to fake support, to people treating me like I’m a liar, or a freak.
“How have other people you told reacted?” he asked.
“... there is a lot of disbelief in the community. Basically most people think we're slackers making up stories so we don’t have to work.” I paused again. “Forget the fact that we suffer and our lives are ripped apart.”
Suddenly I felt I’d said too much, and been too negative. I sent him another message before he could reply.
“Sorry, I've just gone all serious on you. Um... it's just good that you're not holding it against me.”
“Damn that sucks,” he wrote in reference to my experience. “Serious is all good, I really don’t get serious often enough anyways. That’s the strangest thing though, I have no comprehension of why I would hold it against you :) That’s why I was asking about how others reacted.”
I was blown away. I’d found someone so naive and pure who couldn’t see all the horrible things in the world. Who somehow, only saw the good in me. Illness didn’t cloud his judgment at all.
“Well, you're kind and you have an open mind :)” I said.
I sent him another message, to explain.
“For example, I needed extra help with stuff at school. I approached one teacher to tell him in advance that I’d need extra help and he said "Oh, everyone’s getting that these days" sarcastically, and made it clear he'd make my life difficult.”
Chris continued to be sympathetic.
About a month later, I explained in more detail the specific challenges I face living with CFS. Then I asked him what his thoughts were.
“I guess it just shows me some of the stuff you have to go through just to feel normal. What strikes me as ironic though is that I have mates that probably do less stuff than you, by choice. Which leads me back to myself, due to my sizeable ego, and tells me that I should stop wasting what I've got before someone nicks it off me. :)”
His reaction still amazes me, it’s so supportive.
Chris is someone who works far more on instinct and what feels right, and friendship wise, this intrigued me. It also puzzled him why I thought things through so much... why most things in my life are so calculated. Here was our chat.
“Ok, so thinking things through... I guess I've always been a little that way inclined... but when I got sick when I was 10, illness meant so many things had more meaning.”
“How so?”
“Everything looks different from under a blanket of fatigue, everything looks different if you are suddenly very different to everyone else and if your integrity is questioned.
“But what was really the turning point I would say was when I was basically bedridden for a year. When you're stuck with only your mind and past experiences... it's a jungle... when you only have very small amounts of stimulus every day, and large amounts of time to think about that stimulus, it takes on different dimensions and meanings. I'm still like that... I so rarely have experiences, so they have to last much longer than they would for anyone else.”
“:) I think I get a feeling of what your saying, but I don’t think I have the right bits in my head to let me understand that :(“
I continued, “And on the thinking thing, when you add pain to the picture, the meaning of life, isolation and disbelief of illness, desertion of friends, loss of anything and everything that was dear or held meaning... loss of value because you can't contribute to society. Feeling like a burden on those who you love, loosing hope for the future... having fear of what's to come.”
“Who said you can’t contribute to society?”
“I can a lot more now... but then...”
“Lol, even then. You still had this mind of yours didn’t you?”
“I had a mind, but what did that compare to doing nothing around the house or garden, making no financial contribution being completely reliant on others with no hope of that changing... not being well enough to visit my friends when they were going through hard times, putting my parents and everyone through stress because I was sick (that one I still do).”
“Ok so say there was a hypothetical: All this only just happened to you, you’re in bed now, just as I'm getting to know you. I come visit you and we talk. Talking to you has a tendency to make me find things out about myself I never knew or understood. That’s a pretty valuable contribution to me you've done right there :) And I did cheat :) Now you have to either devalue me, which I know you won’t, or accept that I'm right and all that goes along with it :)”
So what is my point? I guess I’ve written this article to first off show people who are sick that they are not alone, that the fight is hard. That I have suffered many losses and been hurt by many people who don’t understand my illness.
There are so many people who don’t understand and often my self worth plummets. But throughout it all there are special people out there, who will value you, who will see something worthwhile behind the restrictions and problems associated with illness. I think everyone has something to offer, no matter their race, gender, religion or status. We’re all humans and we’re not infallible, but sometimes it takes someone new to open our hearts and minds and to show us that despite our faults, we are worthwhile.
- Mary Campbell, May 2004
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last revised 8 June 2004