How do you know when and how (and if) to tell casual acquaintances about your illness? I know some people like to keep their illness to themselves and some don't even tell those close to them. My personal approach has always been quite open - I find it's easier on me if the people in my life understand - but I still wonder sometimes when and if I should tell those I don't know as well.
This is on my mind because today I told the mom of some of Craig's friends about my illness - and about my sons' illnesses as well. I didn't really intend to, I just sort of blurted it out and am wondering if that was OK. I've known this mom for many years but we don't know each other well (in fact I had to look up her name when I got back home!). Her two sons played on the same t-ball team as Craig when they were little, and the three of them are now in the same middle school together and all play soccer together, too. Today was the first time Craig has been to their house, so when I dropped him off, I went inside to say hello and thank you, just to be polite.
She's really nice, and we got chatting about school, the kids, our homes, etc. She said something about how tiring and hectic the holidays can be and that's when I just blurted out that I have a chronic illness so this time of year is extra-challenging for me. A few minutes later, we were talking about the kids' teachers, and I told her that Jamie and Craig also have the same illness and that the teachers have been great about that this year.
That led to the inevitable question, "Do you mind if I ask what illness you have?" and my standard reply, "It's an immune system disorder with a pretty silly name. It's called Chronic Fatigue Syndrome in the US." She asked if it was genetic, and I told her there is a genetic component and mentioned that Craig is doing so well thanks to medication. She was very kind and seemed interested, so I think that was OK.
To be honest, it's a bit of a relief to me that she knows now. I'm sure the other parents wonder why I never volunteer at school and why I sort of keep to myself on the soccer sidelines. You can't just randomly walk up to people who don't know you at all and announce your illness, though sometimes I wish it were more visible to others. At one soccer game this fall, it was pouring out - really raining hard - and one of the parents had brought a canopy for the parents to stand under. They invited Ken and I under, but it was standing-room only, so we politely said thank you and stayed in our side-by-side chairs, huddled under a golf umbrella. They must have thought that was strange, but there's no way I could have stood to watch the game...and no way I could have explained to a whole crowd in the middle of a downpour, either!
So, maybe this is good that at least one of the moms knows. I don't want pity, but it's nice when people understand my limitations and know that I'm not just anti-social! It's a tough call to make. What's your approach?
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Hi Sue, being housebound, I don't have much choice about telling. It's obvious except when I have my voice and someone stops quickly by the house and never sees me again. I think it's easier if people know. No 'why can't you do this' questions all of the time'.
ReplyDeleteExcellent post and question as I am really struggling with this very thing. I would prefer to keep it to myself...for a couple of reasons.
ReplyDeleteIn the past I've told people, but am really getting tired of being 'judged' by the healthy mainstream people...who just don't get CFS. The ones who, the more I try to explain it to, seem to understand less.
Then there are those who don't bother to ask about CFS, just form their own opinions...which falls along the lines of "well...you know...I-saw-her-at-the-grocery-store....so-she-can't-be-all-that-sick" frame of mind.
As you mentioned, I am not looking for pity and would prefer people to see me, as someone who tries my best to do the necessary things....but also want them to realize I do have limitations.
I've had to make my blog private due to these very type of judgements.
But....not telling people doesn't work either....as I know it seems strange to many people when I don't take part in things or have my dh check something out at the store so I can avoid the lineup etc.
Yes...really struggling with this very issue .....
I haven't told anyone at work except the HR department and I asked them to keep it quiet. I've had trouble with people at work deciding for me what I can and can't do after surgery so I can't imagine what they would do with something as complicated as CFS. I decided I didn't want to be fodder for the water cooler gossip so I've done everything through HR and not told any else.
ReplyDeleteAt home however because I am housebound I have told friends and family. The only annoying response I've had is the "well if you just think happy thoughts you would get better" type of stuff. This is from a couple of relatives that have bought into the you make your own reality line of thinking. As if I brought this on myself. I'm still a bit miffed but telling my friends and family has also led to some wonderful things happening. People giving me reiki treatments, cleaning out my fridge for me, going shopping for me or pulling weeds in my yard. All of which have been wonderful gifts.
I have kept an anonymous presence on line for my blog because I write about some very personal stuff. I don't want someone I know stumbling on it and finding out names etc of those involved in my more personal issues. However, I write on line because we help each other by sharing our triumphs and travails.
I struggle with this especially since I'm not working full time and I'm in my 30s. People see me and think I'm perfectly healthy. I've had a neighbor that asked me if I was working and then commented that I'm "lucky" I don't have to work. Little does she know I think she's lucky that she can work. I miss teaching full time. However, I just can't do it right now.
ReplyDeleteLast spring I was feeling a little better and I was working as a replacement sub for a few months. It was manageable because I team taught with a special ed teacher. The two of us became very close. While we were working together I didn't share anything with her. I thought I was getting over my CFS so I didn't want to bring it up. But I've had a bad flare up since Sept and we've stayed in touch, so I decided to tell her about my illness. She was surprised at how well I hid it. It felt nice to be honest and let her know that I'm not searching for a teaching job.
It's a very hard thing to share. I always think you need to trust someone before you can open up about it. A few weeks ago, I went to a book club with women I used to teach with. They knew me before I was sick. (My CFS developed my 6th year of teaching.)They were all concerned about how I've been managing the past 3 years. It was nice to be around people who really knew what I've gone through. Because they knew the illness was the complete opposite of who I used to be-- high energy, exercise fanatic, social butterfly.
I also always feel like the name "Chronic fatigue syndrome" sounds odd. I feel like when I say it people just think, oh I'm tired too!
Tough call, but I think you made the right one!
I tell people I have a chronic illness; and when they prod for more info, I say it's a neuroimmune disease. Only if they are very interested do I mention CFS. My husband, on the other hand, tells everyone that I have CFS. He's a CFS awareness machine. Somehow, it makes me look less crazy when he's the one talking about it.
ReplyDeleteI don't go out much and my kids are grown so I really don't find myself in that situation much. Extended family who live in the area know of all my limitations and it's actually a relief to be able to say "I'd love to but I can't today" and they understand. I think in your situation, it was fine. Word will get around (people do talk about others a lot!) and that's usually ok. No more explaining when you can't do something. In conversations with the other parents, I would assume they know. They may ask questions but it's not to be nosey (usually). It's more that they want to understand your limitations.
ReplyDeleteLike Pris I have little choice in whether I tell people or not...neither does Joel in the fact that the whole congregation had to be told before he took the interim position.
ReplyDeleteI do remember there was a time when I would tell everyone I met...kind of like, Hello my name is Renee and I have CFS/ME.....I think I needed to validate it since I felt I was not getting it from doctors. There is certainly not one way to do this...no matter when or if we do there will be those who do not get it or choose not to. Sadly, we are a nation that prides itself on being exhausted and burned out from too much work and too much activity. I like using ME for a name just because it sounds foreboding! Ha!
But describing it as an immune system problem is good.
Wow, another hot topic!! Looks like there are many different approaches, depending on your circumstances.
ReplyDeleteI like describing it as an immune system disorder because most people immediately recognize that as something serious. Good or bad, people hear that term and often think of AIDS which they KNOW is serious.
Ha ha - Shelli, I loved your description of your husband as a CFS Awareness Machine! Actually, I see myself that way, too, and sometimes I tell people and explain it in part to spread the word. I do use the term Chronic Fatigue Syndrome because many people have heard of it, but then I always follow up with a brief explanation of how serious it is and how the name is a misnomer. Changing attitudes one person at a time!!
Sue
Great post!
ReplyDeleteIt's tough, I can recall times where I have been very open, and I've told someone on first meeting. And another time when I spent 6 weeks of a new university course sleeping at lunch times and not socialising - I didn't tell them for 6 weeks because at the time I would rather they thought I was rude and unsociable than I was ill, but it did get to a stage where I told them and they were more understanding and it explained a lot of my behaviour to them.
I think if you find someone who is nice (like this Mum seems to be) then it's a good thing to share. But I tend not to tell people who I've just met unless I get a special sense that they will understand/be non-judgemental.
And then there's the thing if you do tell someone you have to be prepared to answer all of the "what's that? is that where you're tired all the time?" etc.
Loved this post Sue, hope you have a wonderful Christmas x
I guess the reason I use to tell or not tell is based on the fact that I really don't give a hoot what people think of me. I've told all of my family and friends and I have the attitude here I am deal with it. If you can't that isn't my problem.
ReplyDeleteThe reason I've kept quiet at work is that a misunderstanding could be career suicide at the place I work. It seems like rumors often hold more validity than truth. I had trouble after I was involved in two car accidents and sustained severe whiplash and nerve injuries. I can't imagine what they would do with an invisible misnamed illness like chronic fatigue.
I homeschool now, so it's not the issue that it used to be, but I had to be upfront about the CFS and dysautonomia when my son was in school.
ReplyDeleteI wasn't working outside of the home so it was assumed that I could go on field trips and volunteer in the classroom and work at all the class parties and serve on every committee. When I declined and word got back to me that the other moms thought I was "uninvolved" and "stand-offish," I had to fill everyone in.
After that, I found myself on the receiving end of the pity train, which I hated. Every time I would run into someone they would say, "Oh, how ARE you?" and look at me with such concern that I think they expected me to fall over and start foaming at the mouth unexpectedly.
I try not to bring it up unless I have to say "no" to someone or something and I feel it warrants an explanation. Otherwise I keep it to myself.
You know, Sue, I don't think there is any sure and fast rule as to when to tell someone we have M.E./CFS. I do the same thing and then wonder if I shouldn't have said anything.
ReplyDeleteThe reality is, however, this is our life. And as you so aptly stated, it affects, negatively much of the time, everything we do or want to do, so telling people does help negate the consequences of the negative impact ... at least a little I think.
It sounds like to me you did the right thing here. She was interested so I think that says volumes.
I actually told a neighbor the other day because I had to wear my mask in her apt and her eyes kinda glazed over so I stopped talking about it.
One thing I do know, I'm so glad we can go to each other's blogs and talk about it. Gosh does that help!
I told 2 friends that I haven't seen in years yesterday, and I was really impressed with how understanding they were! I tend to be pretty cautious about telling people unless they are either close friends or people I've known for a long time. May everyone find understanding friends!
ReplyDeleteD.
Most people just know I'm sick...they don't ask too many questions. I did have the "AIDS" confusion with one woman in town, she heard auto=immune and she flipped. If people ask and insist on an answer, I just tell them I have Addison's disease. I don't bring up CFS.
ReplyDeletemo
I think it is hardest in a group when some people know why you can't do some things and some people just look puzzled. My problem is that I look very fit and heathy so they don't believe you they don't see me when I "just have to sleep". I am very lucky in that I work from home and I am self-employed all my clients understand if I have to cancel a meeting. Now I have my electric mountain bike and I am able to get out more I have been completely blanked by other cyclist - but I don't care it has put a big grin on my face. The majority of my cycling friends are just happy to see me again. I manage to play some volleyball and my regular team mates can see the signs of fatigue before me but are just happy to see me but it must puzzle those that don't know. My partner is really the only one that sees the fatigue side of me
ReplyDeleteThank you so much for sharing this on #throwbackthursday linkup! I also have CFS and fibromyalgia. It is so hard to know. If there is an opening in the conversation I tend to tell them. If I am never going to see them again, I don't, I guess I take every situation as it comes.
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