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Chronic Snarkopoloist: The Art of Disclosing Chronic Illness

Post Published: 16 March 2011
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 11 responses. Leave a comment

After years of living with chronic illness many of us have developed an art to knowing just when and how to discuss it. Some of us have learned with whom we discuss and who gets our fiercest ZILCHO discussion.

Whether our illness is invisible or completely obvious, our daily life is MORE than illness.  We are more than our illness, which means that what we talk about should also be more than illness.  Of course it comes up, and THAT is the art.

A friend was running 10 miles per day after going into remission from breast cancer.  People were asking her where she had been the previous year since the running group had been started for an entire year.  In her small town everyone knew about it.  She no longer LOOKS like a cancer survivor.  Yet cancer is part of her STORY.  As she jogged along she said simply, “Last year I was dealing with cancer.”  NO ONE said anything back.  And most people stopped running with her in the group.  She still carries this stigma of being somehow wrong or imperfect, not because she was sick, but because she TALKED about it publically.

What was she to do? They asked. In this case, she did the exact right thing.  However, because she was running with people, what would it look like if she said, “I was rocking out some cancer so I could come back and run stronger and kick more ass.”  Who knows?  I often wait for opportunities to bring up illness with people I don’t know well.  When they ask me point blank I usually make light of even the most horrific acts – not for MY COMFORT but for theirs.

Does this make me a liar? YES. IT. DOES. Does this reduce the impact of illness in our cultural conversation? YES. IT. DOES.

But sick scares people. It reminds them of bad times. It reminds them of their own mortality. We have all watched people die and FEW if any people have a good head on being a caretaker or being a good patient or sick person, let alone being a “healthy normal person” and having a good head wrapped around illness.  I have always tried to grease the wheels for others when it comes to the conversation.

And I still fail. All the time I fail and discussing illness.  I misjudge what others can tolerate.  And I misjudge what I discuss or withhold of my own story.  Disclosing illness is an art.  I’m always perfecting and tweaking it for my specific audience.  I have since I was a child.  I have learned that “take me or leave me” doesn’t take into consideration what OTHERS need to understand or filter through a massive amount of health issues.  They don’t know what it is like to drive oneself to dozens of MRI’s or get chronically diagnosed. They don’t know what it is like to lose husbands and friends and mourn and grieve over illness.

And frankly- it overwhelms me. It overwhelms US. How can we not put ourselves in their shoes and not try to sweeten it and soften it just slightly for others just a bit so they can hear our story. I try to make mine funny because I come at things with humor.  Just last night I got a taste of what the “typical” experience might be. A woman who had a BOUT (meaning two weeks) of kidney issues and one CT scan. She freaked out, had a friend go with her and worried about cancer. She told a horrific tale of crying because she watched her mother die of cancer. So she was worried she might also get it.

She knows I am ill. I don’t talk about it but I don’t hide it.  Occasionally it comes up because we knit together and we’ll discuss things I research or what I’m writing.  Sometimes I’ll have to cancel because of a doctor appointment or I don’t feel well.  She is extremely accommodating.  I’ve never told her my “official diagnoses” though. Why? Because it simply doesn’t come up.  She’s OK with having me in her life. And I’m OK with a friend who loves me and accommodates my schedule.

And yes, sadly- I’ve lost dates or friends because I’ve mentioned my illness or talked about it too much.  Or because I was having a bad day and needed to compress.  And sometimes I DO.  Sometimes even just mentioning that I have an autoimmune issue or that I’m chronically ill or that I deal with ongoing health issues is enough to make people run for the hills. AND IT HURTS EVERY TIME. It does. It does and I have never found a way to inoculate myself from the pain other than to remind myself that I only want people who can handle it in my life – that way I’m not investing myself in people who CANNOT handle me.

I’d love to hear your strategies.  I’d love to know how you measure the environment and know when and how to discuss your health versus keep quiet.  As a long time advocate FOR OTHERS, I often seem to clam up and do a less than good job for myself, glossing over and being overly-stoic for myself.  How do YOU handle it? What are your techniques? Is there an art to disclosing chronic illness?  What do you think? Tell me! I must know!

I’ll be back same time next week! Kiss kiss!

-Melissa

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11 Responses to “Chronic Snarkopoloist: The Art of Disclosing Chronic Illness”

  1. Patricia Saphier says:

    Some people can handle the truth and some people cannot. Those that cannot I do not want in my life. I don’t want to BE my illness, but sometimes I have to talk about it and if a person cannot deal with that, then I cannot deal with them. I try not to let it dominate my life (some days are better than others as you all know) and I try not to let it dominate my relationships and I try very hard not to use it as an excuse. I fail on all counts sometimes. But I get back up and go at life again. When to talk about it? When I need to talk about it. How to talk about it? Differs for different folk – some I use humor and some I go straight at it. Depends on the person. Don’t know if this helps you or not, but thanks for letting me talk! xoxo

    • Melissa Travis says:

      Hello Patricia!
      Wow – I love love love this quote from you-
      “I don’t want to BE my illness, but sometimes I have to talk about it and if a person cannot deal with that, then I cannot deal with them” — SO REAL. Yes yes yes!!!!

      Thanks for sharing it. Very very powerful.

      yes. I’m thinking that’s my reality too! xoxo
      Melissa

  2. Jody Schoger says:

    Snitty,

    All I can tell you immediately is how much I adore this post, and you, for putting it together. I know how many “soul” moments passed before you could find the words for these experiences.

    I need to print out your post and read it again. Many of your points resonated with me; ways in which I disguised issues growing up, and minimized a number of the pitfalls during treatment.

    What’s important to me — and possibly for all of us — to remember is: we did (and do) what was necessary to get by, to survive, to deal with our illness AND the reactions of others. There’s never one without the other. The reaction of other people, from our dearest ones to those we encounter socially, will always be a factor. Not for a moment would I judge you or anyone else for what was necessary to live with some ease with very difficult conditions.

    I have a number of different strategies. My main one is getting to know, understand and love others who deal with their illnesses head on..like you, Lani, Anna..I could go on and on.

    Every one of you has great courage. And together we roar.

    Love & great respect,
    Jody

    • Melissa Travis says:

      My dearest Jody –
      This just made me cry reading it.

      These words especially ring so true – “we did (and do) what was necessary to get by, to survive, to deal with our illness AND the reactions of others.”

      Yes. It is hard not to judge ourselves. But yes – WE DO what is necessary.

      You are my hero and my sherpa.

      I love you.
      xo
      Melissa

  3. RiaTheDeer says:

    Well now then there, to quote James Dean. Isn’t it amazing that we have to go through the ‘you don’t look sick’ crap only to have to pretend we are doing ok to those who really don’t care one way or the other if you really are doing ok.
    If one decides that we really do need to be honest and open up to others not in the loop of chronic illness, we watch as the other persons eyes glaze over, the mouths tightly smile, the heads nod gently, feet and bodies start to move ever so imperceptibly away from you. Then they start running, with the excuses, “Oh ok, catch you another time. (what’s wrong with now?) Look after yourself (My favourite one that one…who the eff else is going to?) Hang in there (yes, I will with a big long rope kicking a chair out from under me) Be kind to yourself…(oh really..please!) Oh my (insert relation here) had that, and they are doing so well now, how come you aren’t?(Coz I enjoy feeling crap and sorry for myself and my endo is just so happy at withholding information from me, really turns me on!) ……etc etc etc…
    So what does a person with chronic illness do? Go insane, drink heavily, or deal with it. Personally I have very few friends, and my family roll their eyes (of course they do love me, really, I think…..) when I tell them how I have something else going on health wise. Of course I can see it from their point of view. Who the heck wants to invite someone who states, “Yes, I’d love to but please don’t hold me to being there, as often I am just too tired to drive/go out/enjoy.” Wet blanket or what!!! Yes it hurts. Why just yesterday I found out something rather amusing which my body has snuck a grenade into my otherwise lousy life. Looking for some empathy, and knowing full well I wouldn’t get it, I spoke to my mother. “I told you you must be going through menopause” was her response. Yes Mum, I love you too. Grrrr.
    My advice? Tell if you want to tell, if you enjoy a good old discussion on the whys and why nots of your illness, go for it. If you feel people will only look at you like a rag in the mud, then make excuses. Tell them you slept late or badly and that’s why you are so tired today. Bullshit if you have to! Put a bit of truth in it! I do! But NEVER ever let them beat you down. Never ever allow them to belittle you or your illness. They don’t like it? Stiff bikkies I say!
    I do what I can, when I can, and no more. I have learned it is my body and I owe nothing to anyone else. No one else cares if I need to sleep 4 hours if I walk a few miles. Yet if they complain about being tired after a long week at work, I just smile and say to myself, “One day you might really know what tired is, but I hope not”

  4. Merrit says:

    Love your post and I think you are already handling the situation properly. Surround yourself with people who will accept you the way you are in the moment. I try not to take advantage of my friendships by laying too much information on them. I care too much about them to dump my crap on them too often, but they have all listened to me talk about the disease from time to time and they still love me. I’m fortunate to be blessed with great friends. I probably give less information when I feel some sort of resistance. Listen to your gut… you are right about not including people in your life who don’t want to hear about it or are scared by “sick” or whatever the reason. I’m not suggesting you talk about it all the time and there lies the beauty of DearThyroid, which plays such an important role. A forum to discuss to your hearts content when you need to.

  5. Linny says:

    Dear Melissa,
    This is wonderful, wonderful. You did a service to open this very dialog. The comments here reflect and sum up all our various struggles with “those” people.
    Without realizing how they can hurt us, they usually do. Thinking of what they think is a positive comment they reflect their lack of compassion and understanding. How can they know?
    But I think the above ideas are all important. I also think we who have suffered have taken the stiffness out of the drink.
    Do we let people in on our worst days?
    should we?
    I haven’t the answer, but it must depend on what “we” need. Sorry if it sounds selfish but I believe we should put ourselves first as a result of illness. We don’t have to tell them that, just decide if you want to be alone with the truth. Or be in the world trying to fit in and be as like “them” as possible. Maybe a little of both, I think this is what I’m doing.
    But thank you for sharing these wonderful answers I love and agree with all of them…..Linny

  6. Ashley says:

    I’m still trying to figure out a strategy for this.

    For years I hid it the best I could and really downplayed my illness, mostly because I was young and wanted to seem “normal”. I’m way more open then I used to be. I still don’t usually bring it up with people I just meet but if I feel comfortable I’ll let them know I have a chronic illness.

    I guess the hardest part is I’ve never met anyone who has a clue what my illness is (hypothyroid with partial peripheral thyroid hormone resistance). I try to explain it the best I can, but most times I look healthy…I’m sure they think I’m playing it up.

    No one has an idea what it’s like to be in someone else’s shoes (I remind myself of this often).

    I think as I age I become more comfortable with my illness and with myself which means I care less what others think of me. If someone is going to judge me based on the fact that I live with a chronic illness – it says more about them then it does about me.

  7. ButDoctorIHatePink says:

    I spent 18 months dealing with breast cancer – finished my last infusion in December. I do exactly what the jogging woman did – I tell people if the subject presents itself. (My hair grew back silver from red so when people see my old photo they comment and I tell them why). I got a new job after my hair began to grow back so nobody knew originally, but it’s no secret. It is who I am now and it’s a powerful experience that you can’t deny.

    And, I’ve not had one negative reaction. Nobody has shunned me and I can’t imagine people not jogging with her again because she got a disease.

    I say it off-hand and I do laugh about it. When people say, “I’m sorry” I say “Don’t be, I’m doing very well now and parts of the experience were great.” But, I don’t dwell on it – people really don’t want to hear the details. I don’t go on and on about any of it unless people ask. It’s just a statement and that’s it.

    There is nothing more boring than people who constantly bring up their health. Unless it’s relevant to a situation, then there isn’t much point.

  8. Reatha says:

    Awesome post. I found you by searching Chronic illness family and friends. I was trying to find support for dealing with the way other people react to illness. Just moments ago my husband left to take our daughter to the park. He didn’t say anything but he is grumpy because today I am doing nothing while he is looking after our daughter. Yes extremely lazy and annoying if I was well but I am not well. He is actually very good most of the time and I think it’s understandable and ok for him to be grumpy. But I wish he would make it more obvious that he was grumpy with the situation and not with me.

    It’s coming up 6yrs in total for me with an undiagnosed chronic peripheral neuropathy. Just a couple of months ago the doctors said they would do no more testing. I find the hardest thing about discussing it with friends is that when there is no diagnosis they have nothing to base their reaction on and so it’s easily dismissed and I often feel that it can be seen as not very serious or even that I am a hypochondriac simply because I can’t give them a name for the condition.

    My stepfather in law recently had very bad pain in his shoulder from working slumped over a computer. He would go on and on about it and I would listen and say yes I understood it was difficult to live with pain. Everytime he would say “you have pain?”, every damn time. His lasted a couple of months and is gone now and neither he or my mother in law have realised yet that I have a chronic illness despite having told them a number of times.

    So now I am careful what I say and mostly go for the Pollyanna perspective. “Yeah I have a PN but it’s all good I’ve leaned to
    deal with it” or my other favourite “It’s a long story” at which point no one ever asks me to expand lol

  9. pat says:

    I am stunned by the recognition I get from this article. I was searching for Art, Chronic Illness (which by the way, comes up very short) while doing research for my art practice. I have diabetes.

    The feeling of abandonment by the US government, let alone partners, family and friends. is acute. And you are right, it HURTS, every single time.

    It is absolutely the most relevant thing I could possibly explore in my practice, and I’ve been avoiding it my whole life. I am tired of ascribing to other people’s narratives to make them feel better.

    I thank you for opening this dialogue, and for your fearlessness.

    Pat

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