I haz a sick

September 29th, 2009

I have a chronic illness that flares up from time to time. If you’re a personal friend*, you probably know what it is; if you aren’t, you don’t need to. It’s not life-threatening, or even painful, but it’s capable of knocking me down to about 30% of operating capacity for days at a time. There’s medicine that helps — sometimes — and things I can do to minimize the chances of a flareup — sometimes. The body is a complex system affected in many ways by many things, and there’s no easy if-X-then-Y with this one.

(The main reason I’m not saying what it is isn’t because I’m terribly private, or that it’s terribly disgusting, but because people feel compelled, when hearing of another’s illness, to either share their own stories of much worse suffering or else suggest this new medicine or diet or asana that worked wonders for their sister-in-law who had the exact same thing, really! Neither of these are lines of discourse that most sick people are at home to. Although it does motivate us to get our strength back, so we can pop you one.)

Part of my New Year’s resolutions last week was to get better. To heal myself. Not physically, because I can’t do that, but to reconcile my body and my mind and my responsibilities and my relationships so that I don’t make things any worse than they have to be. I recently finished Loretta Lynn’s second autobiography, Still Woman Enough, and one line jumped out for its pure simplicity and sense: “I do not believe in pain if there is any way around it.” A woman who has had as much pain in her life as Loretta Lynn damn well knows what she’s talking about, and damn well knows that pain does not ennoble. We’ll be talking about Ms. Lynn — and about Tina Turner, too — a bit later.

I wasn’t intending to spend my New Year’s energy on that project, but guess what, the Days of Awe this year turned into the Days of Aw Crap, It’s Back Again. If the days between Rosh Hashanah and Yom Kippur are like a dangerous ocean voyage, the good Lord decreed that I was going to spend most of my time in sickbay. So I figured, okay, that’s my challenge for this year. It wasn’t what I’d planned to focus on, but you can’t order up life lessons like they’re adult-ed seminars. God don’t run no JuCo.

Anyway, here are my resolutions:

1. Don’t use my illness as an excuse to get out of doing things that I really can do, and that would be good for me, but that I just don’t want to do. Sometimes I will bail out on things when I’m sick because I’m embarrassed to compromise. I don’t want to call a friend and say, “I can’t make our dinner date tonight because I don’t feel well, but I’d love to see you–could you come over for a quick after-work cup of tea instead?” It’s easier to pretend that “something came up” and I need to reschedule entirely. I feel weird going to the gym and only working out for 15 minutes. It’s easier not to go at all. But hey, my friends love and accept me, and I’m sure everyone at the gym is paying attention to their own workouts and not timing mine.

… but …

2. Don’t be all macho or martyrish and force myself to do things that I really can’t. I’m not doing anyone any favors by promising things I can’t deliver. Nor am I doing myself any favors by pushing my limits, either because I don’t want to believe that I have them, or because I want to punish myself for being so weak and stupid as to get sick in the first place.

3. Do what I can to keep it under control. Oh, all right — it’s a stomach thing, okay? And I will pop you one if you give me unsolicited advice. Anyway, the point is, there’s certain things I can eat or avoid eating that put me at lesser risk for having a flareup. Small, frequent, high-fiber/high-fat meals are good; coffee and raw vegetables and too much rich food are bad. Sometimes. Mostly. Like I said, it’s a complex system.

… but …

4. Don’t blame myself when I do get sick, even if I got sick during a time when I wasn’t eating “right.” I’m not ignoring the reality of the connection — although as mentioned it’s by no means a hard-and-fast causality — between my habits and my health, but I truly don’t have to paint it in moral terms. Getting sick doesn’t mean God is punishing me for having a latte. It means I took a small gamble and lost. And we take a gamble every day just by getting out of bed, let alone leaving the house.

… and finally …

5. When I’m sick, to realize that the inevitable feelings of low self-worth and hopelessness are part of the symptoms. I don’t have to fight the feelings, but I don’t have to believe in them, either. That’s a tricky line to walk, but I think I can do it. I did pretty well with that last week, and I’m proud of myself for it.

I’m posting this because maybe you haz a sick, too. A lot of people do. And a lot of us are ashamed of it. We are a problem-solving, can-do, bootstrapping nation with a medical tradition that doesn’t handle chronic and complicated illnesses terribly well. (I’m about the furthest thing from a New Ager when it comes to medicine — don’t give me a smudge stick and healing dances if I need penicillin, already. But that doesn’t mean I think Western medicine has it all figured out right now. If it did, we wouldn’t continue to do research.) And 21st-century American culture has raised body-shaming to something akin to a religious tradition.

So maybe if you haz a sick, you could stop beating yourself up over it. Do the right thing by yourself, as much as you can, and when you can’t, well, that’s life. You can’t always be perfect, and even if suffering is the price you pay for a fall, that doesn’t mean it’s the price you deserve to pay.

Love yourself. Forgive yourself. Heal yourself.

Comments open, and please don’t take my “Don’t give me advice!” screeches to mean that I don’t want to hear what’s worked for you in dealing with your own chronic or recurrent illnesses. I very much do. I mean, please don’t tell me what to eat, that’s all.

*I’ve always thought the term “personal friend” was redundant and stupid, and in most cases, it is. But sometimes it is the right phrase. I do feel I have a relationship with my regular readers and commenters, but you aren’t people I know in everyday life. Friends, but not “personal friends.”


30 Responses to “I haz a sick”

  1. Amy R. on September 29, 2009 1:00 pm

    //I don’t have to fight the feelings, but I don’t have to believe in them, either.//

    This is an extraordinarily helpful sentence, whether you haz a sick or a sad or inability to stop worrying about things.

    And I am greatly looking forward to further Loretta Lynn discussion.

  2. Vicki B. on September 29, 2009 1:07 pm

    Robin,

    I am home with a “sick” of my own today, and over the last several years I’ve accumulated quite a list of them (today’s is one that is appearing after a nearly two year hiatus). And, I have been beating myself up A LOT. Thank you for the points you’ve made and shared. Be well.

  3. Fillyjonk on September 29, 2009 1:18 pm

    This is awfully good advice… I’m appallingly stoic about digestive complaints and absolutely refuse to beg out of anything for them, ever, unless the sole purpose of that thing is eating, so I’m not going to take it, but it’s a good reminder that I don’t get to be irritated when people do. They’re simply better at judicious self-care than I am. :)

  4. veronica on September 29, 2009 3:22 pm

    “We are a problem-solving, can-do, bootstrapping nation with a medical tradition that doesn’t handle chronic and complicated illnesses terribly well”

    I think this goes double or triple for those suffering from mental illness. I do find it ironic that there are commercials for a whole lot of psychotropic meds, but at the same time there’s this huge stigma around actually using them or needing to use them.

  5. Stupendousness on September 29, 2009 4:49 pm

    I have two chronic conditions, both of which come and go, though they should theoretically be manageable. But life isn’t perfect and my body doesn’t always respond to prescribed treatment.

    One would think after living with these disorders for 10 years, I wouldn’t get myself down whenever a flare up occurs, but I always end up feeling some amount of guilt. Guilt that I can’t keep up with chores for the week, that I have to cancel social plans, that I’m not my usual cheerful self. When I’m in physical pain, some emotional pain manages to creep in too, and I feel even less equipped to deal with it. When I’m feeling well, I think back on the painful times and wonder, “Why was I such a sour puss? It’s not like I haven’t experienced it all before.” So then I’ll feel guilty about that too.

    My situation might be a little different in that even though I definitely have flare ups, I often am experiencing a low level of pain in between the super tough patches. So on a fairly regular basis, I have to tell myself, “Just do it” and force myself to put on a happy face, happier than what I’m truly feeling, and go on with life. It’s very tiring!

  6. Laura on September 29, 2009 6:50 pm

    Thank you. This was such a perfect description of where I need to be that I thought we must have the same sick.

    Mine turns out to be migraines, which can help with remembering point #5 – the sick is IN my BRAIN, so of course screwed up thinking is part of the sick. It took me maybe ten years to sort that out, but it lifted such a burden once I did.

  7. Kat W. on September 29, 2009 7:55 pm

    I really needed this right now. It’s timely, to the point, and it’s so good to hear someone else actually say (see someone else type?) the things I have had running through my head for the last month.

    The time has come to start fitting the details around the life I actually live, and to stop trying to force myself to live a life I’ve proven to myself time and again that I can’t.

    It’s no cause for guilt or shame, even if I feel well-conditioned to supply those responses and fully understand the reasons they’re expected. They’re just no longer appropriate, and they were never helpful.

    And Happy New Year! Different Reasons, Same Seasons. Blessed Be.

  8. liza on September 29, 2009 10:08 pm

    I have a coupla sicks.

    I used to suffer horribly from migraines — a couple of times a week. Things got pretty desperate for a while. Working my way out of them was a long process and many things came together to help. One thing that never ever helped was denying that one was coming along. I found that I could never get better unless I admitted to myself that I was getting a migraine.

    When I first started to work seriously on the symptom (the headaches) and the underlying causes, I found myself feeling terrified that if I “gave them up” there would be nothing left. I knew myself with migraines, but they were so big that I wondered if there was anything else there. So the process of healing felt like walking into a huge void or off a very steep cliff. Scary.

    Turns out, most fortunately, that there is something there, and I’m a much nicer person when I’m not in pain or at least fearing pain all the time.

    I haven’t had a migraine since May of 1985. I don’t consider myself cured, just on a long hiatus. Let’s hope the duration of that hiatus increases.

    I also suffer from arthritis, though I’ve found a lot of techniques to be more comfortable (Swimming helps a lot. Heated seats in my car are wonderful. Winter is tough.)

    Some mornings, my fingers are so stiff that I can’t hold a pencil. On cold mornings, going downstairs can be tricky. I don’t talk about it a lot and while my husband is sympathetic, I’m not sure he knows the extent of it. I’m relatively young – 51 – and have been coping with symptoms on and off since my 20s.

    With the arthritis, I just try to endure, taking ibuprofen when I need to, taking care of myself, and trying not to complain.

  9. Dmajor on September 29, 2009 10:14 pm

    Sometimes it helps to remember that the term “bootstrapping” originates from the phrase “pulling oneself by one’s bootstraps” — and it especially helps to remember that while that action can be metaphorically encouraging, it is, in fact, literally impossible.

    Those hidden assumptions can push us too far.

  10. Eeeeka on September 30, 2009 8:26 am

    I have a sick, in that I’m asthmatic. It’s not constant. It is, however, both exercise and allergen induced. Which means I use it as an excuse not to do things. Which I really shouldn’t do. I mean, if I’m in the middle of an attack, yes, not exercising is good. But not exercising in case I might is not.

    Now I just need to get back to the gym…

  11. Lynette on September 30, 2009 8:36 am

    May I offer a piece of advice for the generally healthy friends of those with chronic illness or disability? Please don’t assume what is the “right” or “wrong” level of activity or experience or whatever for the person who haz a sick. We know what we can and cannot do on any given day. Involve us in your lives, give us the option, then respect our answer to participate or not. Lovingly accept what I can do today, and I will promise not to resent that you can pretty much do whatever you want whenever you want.

  12. bluemoose on September 30, 2009 12:02 pm

    #4 really resonated with me. I haz a chronic sick, too, that I can manage to a degree via lifestyle. I have worked really hard over the past few years that I’ve been managing it to look back to see if I can identify a cause when I do have a flare, accept it, and learn from it. Blame, for me, actually can make the flare worse, as it gets me into that mental loop.

    I have also worked on listening to my body more, paying attention to it. I’m better at that now. I am not good about not using it as an excuse, though.

    And I liked what Lynette had to say, too, as I have a few friends with chronic illness (not flares, like me) and I try to keep that in mind at all times.

  13. Alyson on September 30, 2009 3:10 pm

    I had a sick, I think. (I think it’s gone, not I think I had it.) And, the part about a “medical tradition that doesn’t handle chronic and complicated illnesses terribly well” really resonated with me. It was a digestive issue as well, originally resulting in the removal of my gallbladder but not the removal of the condition and then years of going to doctors who would just kinda look at me. It was infrequent and short enough in duration that individual flare-ups were impossible to get looked at in the ‘during’ and then the rest of the time doctors didn’t seem to take me very seriously. It got to the point I thought I was just having panic attacks or it was all me (stress did make it worse). It took an out of state hospital and a bout of pancreatitis while pregnant for a diagnosis and *fingers crossed* solution. I feel much better now! But it was awful when I didn’t. And worse because there was nothing I could do. I really want to send my lab numbers from the pancreatitis to those doctors who were less than helpful.

  14. Jerry on September 30, 2009 6:44 pm

    My chronic illness is on the outside, pretty much visible to anyone who cares to look. So I get advice while in the supermarket checkout line, walking down the sidewalk, or just sitting at my desk at work. I’m at a loss as to how to deter it, so I’m grateful when folks (e.g. you) try to get the word out to Just Don’t Do It.

    Though given human nature, I think this might be a lost cause. I was complaining about unsolicited health advice to one really witty, smart friend of mine, and she was so sympathetic. Less than a week later she was doing it too. I couldn’t have been talking about her, right?

  15. Robin on September 30, 2009 7:15 pm

    Thank you for your thoughtful comments! A few specific thoughts:

    Stupendousness, yes. Everyone says “Listen to your body!” as though your body were giving you totally clear instructions. But it doesn’t, always. I kind of simplified things in my post. Fact is, sometimes I DO have to cowboy up and fake it, and that turns out to be the right thing to do. I was encouraged by a recent article in the NYT Health section about how even elite athletes don’t always know when to play through the pain and when to sideline themselves. So making the wrong call occasionally is another thing we shouldn’t beat up on ourselves for.

    Kat W., totally stealing that “Same seasons, different reasons!” Love it.

    Liza, I think what you said about your migraines is HUGE. I’ve got another post planned about illness, too, in which I will get into those sorts of issues.

    Alyson, we have different diagnoses, but I’ve had that experience, too. I’m terribly sorry I can’t time a flareup to your schedule, Doctor! It’s *so* frustrating. Our landlord had an architect looking over the house last week for some possible renovations … she didn’t look at our leaky roof and say, “Well, I don’t see any rain coming in!” just because it was sunny out.

    Jerry, yes. I feel your pain. One sort of re-framing that, perhaps oddly, helps me is to consider annoying interactions with other people as one of the actual symptoms. “Well, I’m sick again. That means I have to deal with nausea, reduced energy level, feelings of low self-worth, and unwanted kibbitzing.”

  16. Maryann on September 30, 2009 10:22 pm

    Late to the party, but as another of your regular readers who has a chronic illness I had to chime in as well, Robin. This post comes at a particularly good time for me as I’ve had a case of the shoulds regarding my own (in)ability to cowboy up and push through recently. Thank you.

    To Lynette’s comment I would just like to add that this applies among people with chronic illnesses as well. Just because someone else also haz a sick it doesn’t mean they can relate to what you are/aren’t capable of.

  17. reindeergirl on October 1, 2009 7:42 am

    The pity. It’s the pity that gets to me. I have life-threatening food allergies – adult on-set. Didn’t know what was triggering my attacks until my wonderful allergist (now in jail for murdering his wife) teased them out. Some folks feel the need to feel sorry for me (I’m allergic to three common, three delicious, foods that many of us consume in everyday life.) I don’t want pity. I’m able to be around these foods (not airborne allergies), I’m able to cook with them. I can even touch them, as long as I don’t touch any mucous membrane after – I just can’t eat them. I feel I’m not a burden at dinner parties; I feel I can accommodate my friends’ love for these foods.

    So why the pity? I’m a grown-up about the allergies. I had 35 good years enjoying the ingredients; I can prepare similar meals for myself without certain ingredients.

    Also, comments likem “C’mon, reindeergirl, have a bite, it won’t kill you.” In fact, it might.

    Now, about alcoholic. Never drank much. Not an alcoholic, but just about everything except wine “doesn’t agree with me” (to quote Dr. Peter Benton’s character on “ER”). Why must I be pressured to drink? I leave as good a tip as anyone at restaurants – when I get coffee, as tip like I got a cocktail. Sometimes I don’t want wine, and I don’t want to look at the drinks menu.

    There’s a lot of pressure on folks with food allergies and stomach upset (the latter with me, not really an illness, but alcohol just tends to make me nauseous) to not take ourselves seriously? Can’t we just … enjoy our food, enjoy our beverages, without the pity, without the snarky comments? I don’t try to force foods that I like on anyone else.

    /rant over

  18. Alyson on October 1, 2009 9:42 am

    Totally love the leaky roof comparison! Genius.

  19. JoGeek on October 2, 2009 9:10 am

    I have a friend whose just starting to accept and cope with her “sick”. We get into a constant cycle where we (her other friends) make plans that accomodate her sick, and she gets upset at the idea that we’re either limiting our own fun or somehow “coddling” her.

    The stuff we plan is still fun, but we know darn well that if we want her company, we need to do things that don’t involve a lot of walking or more than a few hours of standing. We still have fun, so we’re not giving anything up. We don’t specifically bring up her limited mobility when we’re discussing what to do, we just hold back suggestions we know would make her miserable. I also know that she’ll agree to something she knows she won’t be able to handle for fear of holding us back or denial that she has limits she didn’t have a few years ago. When that happens we usually have to cut the activity short and she’ll spend the afternoon and evening in horrible pain.

    Are we being accomodating and sensitive to her needs, or are we being ableist and disenfranchising? If I want her company I don’t suggest we go hiking, for instance, but if she suggests it I respect her decision and don’t try to talk her out of it. I do hate seeing her in pain afterwards.

    Being on the other end of this dilemma, how do the currently abled plan with consideration for someone’s “sick” without hurting their dignity or making them feel like they’re holding us back? How do we let them know that their company is WORTH planning around? (Especially when they don’t believe us when we tell them outright).

  20. Robin on October 2, 2009 1:32 pm

    Wow, that’s a toughie, JG, and all I can think of is that you, her friends, are sort of getting used … okay, look, I was up late last night, this is the craziest time of year for us, be patient as I work this out … A person has a relationship with their body, with their illness. Your friend has a very bad, dysfunctional relationship with hers. And she’s kind of using you, and her other friends, as a pawn in a fight she’s essentially having with herself. It’s like the way a divorced couple might use their kids to get back at each other. Who are you going to side with? Her or the sick?

    It sounds to me like you’re doing everything you can. Disability/illness or no, you don’t do every single activity with every single friend, because tastes and interests differ. Jane doesn’t invite me to hockey games. Amazing Genius Science Girl doesn’t invite me to biology lectures. I don’t invite Verena to go get pedicures and check out the sales at Cambridgeside Galleria. Your friend is the one who’s making it all about the disability.

    And, like anyone who’s being used as a pawn in a bad relationship, you’re being put in a lose/lose situation. And it’s so much worse because it’s not a bad relationship between two people, but between a person and her body.

    Does this analysis make sense?

  21. JoGeek on October 2, 2009 2:38 pm

    It does, any my sympathy for the lack of sleep. Her relationship with her body and illness is dysfuntional because it’s both new and indeterminate. She’s not used to being sick and no one can tell her what’s wrong or whether it can ever be fixed. So I do understand how hard it is for her to resist the temptation to consider it temporary. If it’s temporary she doesn’t have to bother learning to live with it. But in the meantime her life and relationships are put on hold while she waits to figure it out and as one of her long-time relationships, I object :-) But while there’s not a lot I can do to change her sick, I want to make sure I’m not making it harder for her to deal with it.

  22. Robin on October 2, 2009 6:30 pm

    It sounds to me like you’re behaving fine, although a heart-to-heart might be in order.

    One thing that did occur to me — although I’d be more comfortable giving this advice about someone who has had a longer time to come to terms with their problem — is that sometimes taking the pain is worth it. In a non-disability context, look at women who choose to wear shoes that hurt but look fabulous.

    I have a back problem that makes it EXTREMELY painful for me to walk slowly or stand for very long. I also love museums. So yes, I will occasionally go to a museum, knowing that the price of an afternoon spent contemplating art will be an evening flat on my back with a heating pad. I’d be sort of annoyed if my art-loving friends took it upon themselves to make the choice for me, or if my husband got all fussed every time I said I wanted to go to the new surrealism exhibit.

    But then again — I’ve been like this for a long, long time. So I know what I’m doing. It really sounds like the key with your friend is that she’s in the beginning stages of reconciling with “a sick” that hasn’t even been identified yet.

  23. Shulamuth on October 2, 2009 6:39 pm

    Thank you, Robin, and everyone else who has posted. I haz sicks, and am always trying to find the balance point between them and The Rest of Life, preferably with grace. Points raised have been helpful and thought provoking.

    (As an aside: I stumbled onto this site {blame it on the gas mask bras and an interest in etiquette} but I’ve already decided I’m a faithful reader!)

  24. Robin on October 2, 2009 6:53 pm

    Welcome, Shulamuth! There’s not a lot of places on the internet where people with an interest in gas-mask bras and etiquette can congregate. I’m sure you’ll feel right at home!

  25. Shulamuth on October 5, 2009 1:09 am

    I can think of lots of interesting etiquette questions involving gas-mask bras!

  26. Ekaterin on October 17, 2009 1:49 am

    I haz a sick. Actually I have several, and I am lucky in that what one needs is not what the other hates. Yes I know what you feel about eating right. And your sick might not like coffee (example!) very much. But sometime your spirit, your soul likes coffee very much, and you need to feed your soul too. The bravest man I know has been sitting in a wheelchair for (now) 15 years) and doctors tell him he should not be able to move from one chair to another by himself the way he does, because his leg muscles have disappeared, but he does. And he is (most of the time) happy and hard working. If he can do that, and be happy, I, who can do so much more, can do my best too.

    So what I wanted to say, for me, I sometimes do things that are not the best for my body, for my sick, but which my spirit, my soul needs at that time, and I use the example of another person to motivate me when I feel sorry for myself.

  27. La BellaDonna on October 24, 2009 9:24 pm

    I haz a sick. Several, in fact. They’re not going away, EVER. Telling me that “you don’t LOOK sick!” when I have informed you, on numerous occasions, that I haz a sick, that I cannot go to lunch with you because of my DOCTOR’S APPOINTMENT, doesn’t help. What were you expecting? Leprosy? Are you disappointed I don’t look worse? I don’t look the way you expect me to look – when you DON’T KNOW WHAT’S WRONG – so I’m what, lying? STFU already.

  28. Delana on December 1, 2009 8:17 pm

    I don’t mean to sound overwrought, but you know me, so let me just say, this is a beautiful post, and I got misty there for a second. I’ll tell you why some other time.

  29. MW on December 22, 2009 5:03 pm

    As another person who haz a sick or three, I really appreciate your post. One of the best essays I’ve found on explaining our sicks to others (and ourselves) is “The Spoon Theory” by Christine Miserandino, at http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

    When friends have read this, I can explain that I’m short of spoons today and they completely understand. It’s also useful for understanding kids with special needs, friends under stress, etc.

  30. Phira on January 11, 2010 2:26 pm

    I also haz a sick, one that’s really difficult to explain to people because it’s not contagious, and usually not physically debilitating, but that often does prevent me from leaving the house (it also comes with a side order of embarrassment and depression!). When I’ve had flare-ups (again, a lot of people who don’t have chronic illnesses don’t understand what this really is like), I’ve often missed class or work, and it’s been nearly impossible to explain WHY I need to miss class or work without fully explaining my illness.

    And then, often, people still don’t get it unless they’ve seen me during a flare-up.

    I really like your haz a sick resolutions, and although I’ve been 15 months now without a flare-up (personal best; before this, I couldn’t go 4 months, and the flare-ups lasted 2+), I think I might borrow these resolutions in preparation for the potential next wave of crap.

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