You Don’t Look Sick

May 24, 2006 at 1:44 pm (Uncategorized)

As anyone who has ever suffered from a chronic illness knows all too well, there’s only one thing that comes close to being as annoying and draining as the disease itself: idiots responding to your disease. Perhaps idiot is too strong a word, because, really, these people aren’t stupid – they’re just insensitive, clueless, and afraid. But I like using idiot; it has solidity and verve to it.

I’ve only had sarcoidosis for two years. When I hear about folks who have suffered with this illness for fifteen or more years, I wonder how they have managed to interact with the world without losing their minds or resorting to assault rifles.

Before I continue this rant, let me be explicit that I have many wonderful people in my life who are not idiots about my illness. Every single member of my family is incredibly compassionate and nonjudgmental. I have friends who want to understand how my life has changed and how they can help make things easier, and I was lucky enough to get diagnosed with sarcoidosis right away. I know several people with chronic illnesses who had to endure insufferable doctors insinuating they were hypochondriacs or malingerers before finally getting the diagnosis and treatment they required. Although I complain about certain doctors in my life, I have been exceptionally fortunate in finding (and being able to more or less afford) specialists who know as much as there is to know about sarcoidosis – which is not a whole lot.

I am also aware that when people are idiots about illness, they are not responding from the compassionate part of their brains. Hearing about or seeing someone who is sick – and worse dying – activates some reptilian piece of our consciousness that is consumed with self-preservation and fear. I know that insensitive comments are really about the idiots’ fear of death and illness, not about me. I’m sure we have a primal survival mechanism that propels us away from sickness, even when we rationally comprehend that sarcoidosis or cancer is not contagious. But we also have the capacity to move beyond our lizard brains and act like humans. We can overcome the fear – but sometimes we seem to choose not to. There’s where my thoughts of assault rifles enter the picture.

But I suppose that might be a little drastic. So, in case you are an idiot who has happened onto my blog, or if you are unfortunate enough to have a chronic illness and also have idiots in your life, I have prepared an easy-to-follow guide of how not to respond to someone who is chronically ill.

1.) Never, ever tell a chronically ill person, “You don’t look sick.” Saying this is totally invalidating and minimizes the illness. I have a friend with cancer who has been undergoing various chemotherapy combinations for over a year. I met her for lunch recently, and if I had just glanced at her, I would have thought she looked fine because she was dressed nicely and was wearing a wig. The reality, though, is that she has lost a significant amount of weight and all of her hair. Her mouth is full of sores that are so painful she can’t eat solid foods. She is constantly sick with secondary infections; any spare time she has, she devotes to napping.

Now, let’s pretend that you’re an idiot who says to my friend, “You don’t look sick.” Whether or not you intended to, you are implying that she’s not really ill. This puts my friend in the odd position of either defending her health status and insisting she’s sick (and then feeling really weird about it) or walking away choked with rage. If you’re trying to pay a compliment and want to help someone focus on positive things, skip semi-accusing them with, “Well, you don’t look sick,” and try instead “You look amazingly well considering all the health problems you’re having.” See how easy that is?

2.) Never, ever say to a chronically ill person, “You’re still sick?” This oft-repeated phrase also carries the not-so-subtle message that the ill person should be better. No one who spends as much time at doctors as the chronically ill wants to take any of your crap on this. We already devote enough time flogging ourselves for not being well. Being chronically ill means you don’t get better quickly – or at all. People with lupus, MS, or sarcoidosis are sick for years and there is often little in the way of treatment, so don’t act shocked – and even outraged – that someone has the audacity to remain ill for more than a few days. I know that the thought of being ill for a long time is terrifying (welcome to the land of the chronically ill), but you’d better get used to it. Given all the chemicals and crap we’ve pumped into ourselves and our environment, there’s a good chance that you, too, will develop a chronic illness and can enjoy the comments of former idiots like yourself.

3.) Do not make treatment suggestions to a chronically ill person. I don’t care who you know who got better taking fish oil, distilling frog urine, or by subsisting on apple peels. I don’t give a hoot about who mysteriously recovered from a dire disease – even if it was you – with acupuncture. Unless you are a doctor well-versed in the disease of the person you’re talking to, don’t assume you can offer some quick-fix therapy. It doesn’t make us feel better. We worry about how to get well all the time, so we don’t want or need our friends (idiots though they may be) to pile in. Moreover, the subtext of this treatment “advice” (as with the two above) is that we sick people can fix ourselves, if only we worked hard enough at finding the right cure. Nope. We are not puzzles missing a key piece.

But if, despite the foregoing, you’re still absolutely, positively sure that you have useful information to impart, get permission first. At the very least, ask if your chronically ill friend or acquaintance wants to hear what you have to say. Try prefacing your miraculous cure with, “I know you must get a lot of health advice from people; I have some ideas about things that have worked for me/my mother/my pet pigeon. Would you like to hear them?”

I don’t know why it is that people who are interested in alternative/naturopathic medicine  (I’m going to call them “homeos”) are so much more tenacious than their antibiotic-taking counterparts. I’m sure there are many healing qualities to various supplements, minerals, and herbs. This does not mean that I want to hear about them.  Nor does it mean that 10,000 miligrams of goldenseal brewed into a tea will restore me to perfect health. I think the ferocity with which homeos disseminate this information stems from their belief that Western medicine suppresses any dissenting opinions or models (which it probably does). I sympathize with your desire to share your insights. Really, I do.  Being sick has taught me that people’s notions of health and medicine are frequently more akin to religion than science. But I don’t like proselytizing, whether it comes from homeos or Jehovah’s witnesses. Stay away from my front door! If it’s any consolation, I don’t want acolytes from the world of pharmaceuticals or surgery showing up either.

Worse yet are people who want to proclaim the power of positive thinking and healthy lifestyles. Please don’t assume that someone with cancer or an autoimmune disease is overweight because they are lazy or misinformed. We really don’t need you to tell us that we would feel better if we lost weight. (It reminds me of when I was a smoker and perfect strangers would stop me on the street to tell me that smoking is unhealthy. Gee, you think?) Quite often, though, the chronically ill gain weight because we take medications that bloat us and increase our appetites or because we feel too damn sick to make it to the gym or go for a hike. It’s not always a question of will power. This week, for instance, I worked out five days and followed my weight watchers plan. The result? I stepped on the scale this morning to discover that I’d gained two pounds. I really don’t need an idiot lecture on a day like today.

If you really want to address someone’s weight, diet, or exercise habits, do it in a way that is kind and loving. Put another way, be a friend, not an idiot like, say, the woman I encountered in the grocery store who managed to violate two of my idiot rules at once. “Wow, Rebecca,” she said. “You don’t look sick, but you do look like you’ve gained some weight.” Ouch. My mother did the most amazing job with this a few months ago when I was wearing pants that were too tight for my prednisone-enhanced butt. “You are so beautiful,” she said. “It doesn’t matter how much weight you have gained, you are still beautiful. You have beautiful skin, hair, and eyes. Let’s find you some clothes that enhance that.”

And people that lecture me on positive thinking will be shot. It’s just the most humane alternative. I know that there are people who believe that illness is caused by bad attitude, that somehow our bodies express the sickness festering in our minds. I once listened to a Louise Hay tape, where she soothingly intoned that all I needed to become healthy was to imagine myself healthy. Well-intentioned friends have given me books on point. Nothing makes me angrier than this worldview. If you subscribe to it, keep it to yourself.

In calmer moments, I know that this uncompassionate attitude comes from the reptile brain as well. We are afraid of sickness, so we imagine illness as something within our control. The warped thinking goes like this: “Suzie is dying of lymphoma because she swallowed her anger for years and years; I, on the other hand am psychologically healthy, so I won’t get cancer and I won’t die.” Not only are you being an idiot, you are setting yourself up for a big shock. Guess what? Everybody dies. You too. Blaming the victim, with a mindset every bit as Puritanical as the Plymouth colonists – even if you’ve dressed it up with New Age triteness – isn’t going to keep you well. It will just keep you an idiot.

If you are genuinely concerned about your chronically ill friend’s attitude, don’t inflict pop psychology, judgmental books, or corny tapes. Instead, try acting in ways that might actually improve your friend’s outlook. Chronically ill people feel lousy a lot of the time. It’s depressing and lonely. So rather than pontificating about positive thinking, bring dinner one night. Or take your friend to a mindless movie, babysit her kids, clean her toilet, treat her to a manicure. These generous acts of compassion and care will make someone feel instantly better about themselves, their illness, and the world they inhabit.

4.) Do not ask overly detailed questions about a chronically ill person’s condition and treatment unless you know them well. There is nothing more tiring than having to spend twenty minutes detailing my symptoms and my prognosis to a virtual stranger I’ve stumbled into conversation with at the gym. There is a line between concern and voyeurism. You know where it is, so don’t cross it. I’ve come to realize that the people who want the nitty gritties about my sickness are, once again, acting out of fear. You can see the busy wheels of their minds clicking off symptoms to see if they correspond to any of their own. I know someone with a deadly form of brain cancer; he told me that people perpetually ask him how his disease started. They are more concerned with their own health than his. It’s a natural urge to double check that you don’t have MS or inoperable tumors, but it is tremendously invalidating and selfish.

The bottom line is that chronic illness is a terrible burden – for those who suffer from it and for those who are part of the sick person’s world. It’s hard to be sick, and it’s hard to watch someone you know, like, or love struggle. People act like idiots when they ignore the core of fear at the center of the human condition. We all sicken and die. It’s not fun to contemplate. But rather than avoid this universal bit of pain and blame a sick person in countless flippant ways, admit to your unsteadiness in the face of it all. I wouldn’t think you were an idiot if you told me, “You’re sick and I don’t really know how to respond to you. Can you help me deal with this in a way that is OK for you.”

4 Comments

  1. Roz Weiner said,

    Dear Bec,
    This post deserves immediate publishing in the wider universe…I can just see persons everywhere who have endured the “idiot-cy” of which you write say…right on writer, write on.
    much love,
    mom Roz

  2. Mellissa Welford said,

    I just wanted to thank you for this wonderful site. I love reading it. You are so upfront, and right there. It is like listening to my brain talk. And thanks for the heart info on SarcBuddies as well. Keep up the great work, and enjoy that two year old……before you know it they turn 10 (like my baby just did in March) lol.
    hugs
    Mellissa

  3. Will Choy said,

    Bec:

    Life is so brutally unfair. But, your fight against that unfairness is so very inspiring.

    I cannot say that I know what you (or Jay) must be feeling or going through. I guess I’m lucky for that.

    My only experience with such severe illness was when Maile’s sister, Yolanda, was diagnosed with leukemia about 2 years ago. She, like you, is a relentless perfectionist and driven with a passion that I cannot undestand but only admire.

    When she was diagnosed – everyone’s lives changed. Maile’s parents and oldest sister basically moved to Cleveland (where Yo had just started a surgical fellowship) to tend to her while she received treatment. Maile, who had just started a new job, went out as much as she could, which tore her up because she felt like she wasn’t able to do anything well enough – be a sister, wife or a lawyer.

    Like you, Yo had every possible complication that the doctors could expect. If there was a 1% change of a very nasty side effect – Yo got it. The scariest one was where she slowly started to lose feeling on one side of her body. For a surgeon, that is like witnessing the slow and gradual disappearance of your training and identity. The numbness slowly spread to the rest of her body and within a few days she slipped into a coma. But before she went into a coma, she had a tube down her throat and communicated only by scribbling notes.

    Luckily, she came out of it and is now in remission. She is approaching the two year mark, which is a milestone. But the real big one will be 5 years in remission.

    She has basically put her job aspirations on the back burner. She will be starting a surgical position at Kaiser in South San Francisco in July to be close to her two sisters. Needless to say Maile and I have extra pressure to have kids now.

    We are happy about health today but worried constantly about health tomorrow. I can only guess that you and Jay feel the same way on good days. I will send you all strength I can so that you are there to see Andrew grow up, make mistakes, and live. Selfishness is good now and you need to be more selfish so that you will be there for Andrew, yourself, and Jay.

    Love,

    Will

  4. Anastasia said,

    Hallelujah and Amen! Thank you so much for writing this! It should be required reading for everyone with a chronic illness an anyone coming into contact with them. I see a book in your future…. Care to talk more about that idea? Call me! Love, A PS you are an inspiration

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