bad morning, a retrospective

I feel like shit today.

Not so much physically, although my hip is killing me but it’s “just pain”.  It makes it hard to walk, it’s just there, it’s something I can try to tune out if I’m not moving around.

What feels like shit is my brain, my spirit.  I was trying to describe it to my husband, trying to think of how I will describe it to the psychiatrist I am seeing Monday.  It’s hard.  The anxiety is easier to describe, it’s so pointed and abrupt, so obviously not ok.  The feeling of dread, of unceasing worry about hypotheticals which should have little to no place in my day but which pop into my head unbidden and unnerve me deeply, leave me feeling as if this terrible thing has just happened or is imminent, as if there are warning signs of it all around me.  It’s response without stimulus.

The depression, if that’s what it is and jeez if it’s not I don’t know what else to call it, is different.  More nebulous, more insidious.  It’s a sapping of will, a dwindling, an absence.  Will is what I have relied on for so many years, and it’s a strong will I usually have.  Thank god it is, because with the health issues and the PTSD, I really have had lots of call to use it to pull me through the tough times, tough sensations that make it hard to get up and go, to do things, to occupy myself, to keep my attention focused (more or less well, but at least in a way that feels properly effortful, right, and good), to follow through with things like making and eating food, daily tasks we do even just for maintenance of self and environment.  Silly me, I didn’t know this will was apparently finite.  That someday I would reach for it without even thinking, as I do, to move myself to do the things I need to do despite the daily elements of my chronically ill life like fatigue, dizziness, nausea, pain, anger, despair, shame, and it would just be absent.

Today, it is absent again.  How do I define what it feels like to have this absence?  How do you describe a void?  It’s harder than describing the additive symptom of anxiety.  Describing the void, it seems like the best you can do is describe the borders of it, the things that bound that space, and then just point and say, “and there is where SOMETHING should be but it’s not”.

I’m still perplexed by the onset.  I like to know where things came from, why they came about, mostly I think because those offer clues to how to address them.  This…did it come about from lassitude, the necessary lassitude that comes from having a fatiguing chronic illness which occasionally rears up into some set of acute, disabling, and ugly symptoms…the crushing weeks of nausea I experienced cyclically from January through March this year?  I was necessarily less active, had to cancel more, plan less, and now I am experiencing the absence of Things to Do because I had to cut so many things then that now there is little left and little to move towards.  Work, volunteering, friendship activities.  If so, I just need to go out and do those things now to fix this, right?  Wrong.  The parameters are still in place, i.e. I am still sick and so I cannot take on a full time job, I cannot even guarantee that I’ll have the stablity of health to make regular attendance at a part time job.  The best I can muster is work on finite short term projects that I can do from home when my health allows.  The irony that my physical health would have allowed me plenty of that but that I cannot find or get it these days is not lost on me.

So then lacking that, I should focus on other things with more lax “attendance requirements”, like volunteering.  I tried that.  I was in touch with the library folks in January and February, there were attempts to place me as a tutor with a student, and they all failed.  Between the weather and my cycling nausea (which, reading back in those early february emails I am reminded I optimistically thought of as a stomach flu, until it kept coming back), I was unable to make this happen.  And so that volunteering work went dormant.  I started PT and OT at the end of February, still feeling quite terrible as I recall.  That was PT twice a week and OT once a week, and that wasn’t including any other medical appointments I had in there (follow up on my check in with my primary care which included a visit to the nephrologist, a day full of appointments at the BATH for podiatry, Allergy, and something else…dentistry?  A filling maybe?  I think so.)  That takes me into March.

March was full of medical appointments.  Trying to get to the bottom of the nausea, PT, OT, Disability forms, that was March.

April started with a sleep study.  A follow up appointment from the neurologist I saw, which itself was a follow up to a follow up to a follow up (I went through four neurologists total at one clinic because they kept leaving, I had started with one who did autonomic function and sleep medicine and when he left I got passed around to the rotating crop of sleep only neurologists).

In April, I wanted to try to get out more socially.  The snow was finally melting away so getting out of the house and getting around was more of an option.  The library volunteering opportunities were limited, I was not going to take on another class, not after the last four months of acute awful flare ups, but I was emailing with a new volunteer who would be teaching and whom I was hoping I could help out as an in class tutor.  Meaningful work, occupation, without as big or formal of an attendance requirement.  Then that was put on hold, reasons outside of my control.  April also brought family visits, and all my energy went into preparing to host and hosting, and then recovering from hosting.  While recovering from a big family visit in mid April, I had an appointment with a new neurologist, a last ditch effort to find someone to help me investigate and manage the autonomic issues that have come to a head over the last two years or so.  She was…ok.  Not great.  Nice, nice enough but she seemed to not really be inquisitive or eager to dig at all, just told me that this comes with ehlers danlos, Ok, so we’ll go with that.  Fine.  She wants to see me in August for a follow up.  Ok.  Fine.  Follow up on what, I’m not sure.  Take my blood pressure sitting and standing twice a day, fill out a survey cataloging my symptoms, except they aren’t all on there, some of the ones that cause the most disability, the most inability to work.  I found myself wondering if she really knows what she’s doing or if she’s just become some kind of “nice” EDS/autonomic doctor who treats us as a sort of hobby.  This impression was not helped by the fact that she recommended a gluten free diet despite my having tried that several years ago and consistently testing negative for celiac disease, and the fact that if I eliminate gluten from my diet, I will have considerably fewer calories to my day.  Despite all this, a doctor who insists that I would benefit from a gluten free diet on only the flimsy reasoning that “some of my patients report feeling better on a gluten free diet” can’t help but ring my charlatan bells.

Early May.  My husband’s parents visit.  More preparing for hosting, hosting, and recovering from hosting.  I think this is when I am actually starting to feel some increased anxiety, decreased mood.  It’s so gradual, so easily dismissed as a bad moment, that I don’t realize it’s a pattern yet.  But I recall in May having to make more of a conscious effort to do things like regulate my mood (I’d find myself in a bad mood for no really immediately good reason and have to choose to put it aside and focus on the here and now, and to essentially choose to be ok, to be in a better mood), I also think this is around when the anxiety started ramping up.  Fears that my husband would die, fears about retirement and having no money, shit like that. I assumed they were all grounded fears, that I was just feeling extra vulnerable for some reason and that it would pass.  I didn’t realize it would grow.

May brought more talk of tutoring/teaching, but a request from the library staff to “put it on hold” until after their recognition event in mid May, which was ok because in mid May we had my sister’s graduate commencement (which was an hour away and involved a half day trip with packed food and time away from a couch where I could rest if I had to), then came a week with husband’s medical stuff, another early half day at the hospital where he got double scoped, and I sat without much for food in the waiting area, feeling crappy, not able to lay down, keeping my feet up as much as possible and pounding cold water for the temporary blood pressure elevation it brings.

The last week of May, I finally was able to reconnect with the library staff.  We made plans for me to meet weekly with one student to tutor them.  I spent the next TWO WEEKS trying to get in touch with that student to set up plans to tutor, but to no avail.  Finally, the library staff connected me with another student, which brings me to last week.  And last week was when the lack of things to do, the occasional visits with friends for coffee, the days at home with nothing, not even PT or OT to break it up, all of it, started to pile up on me.  I had been slowly decreasing how much I was cooking and therefore how much I could eat, but I found even when I forced myself to prepare food, I was throwing much of it away at the end of the week uneaten.  I just didn’t have an appetite.  I was losing weight.

Then came the sex.  Husband and I tried one day I think two weeks ago now, it just wasn’t happening for me so I gave up and, er, took care of him.  Then the next week, this past weekend, I thought I’d give it a go anyhow.  And it just…didn’t work.  Just didn’t happen.  I’d say it was the equivalent of impotence in a man.  That was devastating.  The days leading up to it had been particularly bad for anxiety and that sapped will feeling, restlessness with a side of sucking inability to motivate myself to do or stick with anything I tried to do to alleviate the restlessness.  Did I mention the anxiety?  That then turned into anxiety about the anxiety, about the incurable restlessness, the sapped will, the not eating, the lack of attention or ability to derive even satisfaction (normal for me) from doing the small and big (for me) things I need to do to take care of myself, my pets, my household.

So this weekend it all came crashing down.  I cried a lot.  I couldn’t stop once I started.  I was afraid of all sorts of hypothetical situations, worried that this was a permanent change.  Horrified that I hadn’t noticed this creeping up on me, how out of touch with myself I had been.  How easy it was to explain away each loss of ability or in the case of the anxiety newfound ability to scare the shit out of myself, as something situational and transient, controllable.  I let this happen to myself, right?  I made it happen.  I stopped tending to my psyche and sexuality, maintaining them because for much of January through March, I was just surviving.

Or did I?  Because here’s the thing.  I’ve had bad, bad,bad times before.  And this has not happened.  This feels very alien to me.  Even for “bad me”, this is not the type of bad me that I get.  I get mad, I have uncontrollable rage.  I act out aggressively, verbally, sometimes physically.  I hit things, I break things.  I am morose and moody and tumultuous.  I get more promiscuous than usual.  I know these bad things well, I’ve spent a lifetime dealing with them and finding ways to manage them.  This is new, very different.  And when I think back on the past few months, and what was going on that lead up to this point, there is one thing I am reminded of.  In March, late March I think?  at the advice of my GI doctor in response to the cycling crushing nausea, I increased my Reglan.  I had been taking 10 mg 3 times a day, often getting away with twice.  She recommended an increase to 10 mg four times a day, and I did it.  Not without some worry, mind you, but I did it.  I upped the med because the nausea was so crushing, it made me feel suicidal.  The thought of being a slave to the nausea and how it robbed me of being able to feel anything good was too much, so I upped the Reglan despite the feared side effect of tardive dyskinesia or other dystonia, which I had good reason to fear since in late Fall I started having muscle spasms in my face, around my mouth and under my eye.

But what I forgot to be vigilant for was the other set of side effects of Reglan.  The anxiety and depression side effects. It just didn’t even cross my mind.  And I wonder if that’s at least a part of what’s going on now.  One bit of evidence against it is that since my appetite decreased, I didn’t take it four times a day on days when I didn’t eat three “big” meals.  But that was sporadic.  I have, for the last three nights, stopped taking my bedtime dose.  That plus the fact that I am now officially only eating twice a day means I am now taking half the dose I had been taking since March, more like what I was taking before.  So far, I’m still not ok, but I’m trying to stay hopeful that maybe it just takes a little while to get out of your system.  It came on slowly, it may have to retreat slowly.  Reading the internet, when I can be moved to even bother doing so (again, very weird for me), you’ll find patient forums where people claim that Reglan gave them permanent mood disorders, which is scary but I try to remind myself that reading patient forums is just plain scary, that these are many of the same people who report placebo effects of gluten free diets with such confidence that their otherwise well trained neurologists believe them and pass that shit on to other patients.  So I try to take it with a grain of salt.  But still, it is worrisome.

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Been a while.

I haven’t even looked back to see when I last posted here.  If I had to guess, I’d say this time last year?  That was when all the shit hit the fan, health-work-life wise.  Let’s see, the cat was sick, I was out on leave for vertigo while my boss was on maternity leave, which she started immediately after she and I had a falling out over her wanting me to do a job at work that I was having a tough time doing.  My disclosure of that was insufficient, she sent me and the whole office some pretty pissy emails around that, including a passive aggressive one to me rescinding support she had promised in the coming months, leaving me to do a job that she knew I couldn’t do on my own.

This time last year, I was waiting for the other shoe to drop.  It did.

While my boss was out on leave, she was nevertheless in communication with everyone else in my office, everyone but me.  She went to the conference I missed (vertigo, last June), and was mad that I wasn’t there.  How do I know?  She cut me out of a meeting that was in my area, that had been requested with me initially and which I had opened up to her and another member of our office.  She just -snip- stopped cc’ing me in the middle of planning.  I found out later in June that the planning had continued without me.

She was about to come back from leave and it turned out she had to rush to do our employee evaluations, they were using a new process.  Ok, so she sent me and my coworker emails telling us to send in the metrics we thought we should be evaluated on.  I did.  She ignored it, within moments of my sending it she sent something back to me that was totally different, and which…and here’s the rub…included the job I had told her in April that I couldn’t do.  Even got an official accommodation around it, but they wrote the accommodation so specifically that it left her wiggle room.  And wiggle she did.

I ended up leaving my job.  I complained to HR, to my boss’s boss.  I got a deep lack of support.  The idea of going into the Fall semester knowing I no longer had support, knowing my boss was now out to get me again (and please, I’m not being dramatic, she was a very vindictive and tantrumy type….the last time she was this mad at me she had revised my job entirely and put me on an attendance plan, instituted a policy that I had to attend every departmental social event, no I’m not making that up….it was in my HR file…she yelled at me and stomped around the office for weeks.  It was terrifying for someone with PTSD, struggling to work full time with serious health issues).

So I left.

And it’s been nearly a year.

And I’m having anniversary effects.  Because this was a really bad time of year last year.

I’d like to say that this year has been a nurturing calm one full of recovery and self discovery. That’s not the case. I’m depressed, officially now it seems.  It’s not like my health problems went away, but now I don’t have to drag myself to work.  Which is good, because it was killing me, mentally and physically to do that.  But now I have quite a bit of unstructured time.  When I feel very bad, this is ok because I need that time to rest and recover.  But occasionally, I’ll have a stretch of days or even weeks where I don’t feel VERY bad, or where I feel mostly ok aside from a few acute issues (like nearly passing out in the bathroom after eating last week…makes me thankful I’m not working) and I don’t do well with unstructured time.

I’ve tried structuring it but it’s not like I have boundless energy for activities.  That’s the issue, if I had that energy or the guarantee that this day or that wouldn’t be a sick day, I’d be working by god.  But I don’t, so I can’t work.  But that also means it’s hard to make plans, and to keep plans.  For example, I tried going to Chinese New Year this past Winter with a woman I’ve been trying to become friends with. A fluctuating round of nausea (intense, soul crushing nausea) reared up and halted that at the last minute.  I was so disappointed.  I cried.  I don’t cry often anymore about my health, but there are some things that’ll do it.  A new and frightening symptom, a symptom that suddenly gets and stays worse.  Having made plans finally after the snow from one of the many (many!) storms we had had receded a bit only to have to cancel them, knowing I’d soon have to hole up for another two or three record storms.  That did it.

So why am I officially depressed?  It’s been a year of this: It’s been lots of doctors’ appointments and you know how I hate those.  It’s been applying for disability, an inherently degrading and hopelessness inducing process which also btw means you can’t take doctor breaks.  if someone sends you to a specialist, you have to go or it looks like you don’t care about your health, aren’t taking it seriously, so why should the disability people?  They apparently don’t know about doctor fatigue, both the doctor and patient side of it.  It’s been too much unstructured time but not enough health to make and keep plans to structure it at all.  It’s because it was a brutal winter here near big historic northeastern US city.  It’s because it’s June again, and this time last year was so awful.  It’s because the last five years at work have used up all that I had to give – and before that was grad school and my division head telling me that he didn’t think it would be “fair” to even consider health accommodations.  It’s too many years of pushing through and past and down and going going going to get things done – and now that I have space to stop and breath, I see that I have nothing left for me.  No social life, no chance for one, no ability to even do a great amount of volunteering (I did try in the Fall – I taught a class a the local public library, but health problems meant I had to cancel and reschedule three out of only 6 classes.  This Spring, they decided they didn’t want me to teach a class again, not surprisingly – I’m tutoring but no class).

I’m surviving right now, but that’s about all.

no, thank you

I am not good at saying no.  I like to think I am, but truthfully, I am not.  I have discovered this as I have gotten sicker.  I suppose I should have noticed it way back when my blood sugar and endometriosis were my biggest problems.  Specifically, the blood sugar.  I have passed out more times than I’d like in public due to not saying “No, I don’t want to keep walking around looking for a place where EVERYONE wants to eat.  I need to eat now, you all can stand out here and debate it but I’m ducking into this convenience store and buying a snack….”  There were a few times in my mid twenties when I tried this, always inelegantly.  And that is another example of being bad at saying “no”, doing it but doing it badly.

That’s, unfortunately, still where I’m at.  My health problems mean I have to say “no” alot.  These days, I often preemptively decline by avoiding situations which I suspect would lead to a whole bucket full of poorly executed “no”s or worse, going alongs and ending up with hell to pay health-wise.  This gives me the reputation as someone who does not WANT to, rather than someone who cannot.  I’m not sure there’d be a hell of a lot more understanding for me if it was the latter, but I can tell you there is zero for the former.

E.g., my boss sent out an email yesterday letting the office know about a food discount event going on at a local touristy landmark.  Local as in normal healthy people could walk there, wander around, and walk back without it destroying their day or week.  Not local enough for me.  And not something I think I can do.  Walking there and back is one thing, but add in the wandering around a food court full of stuff I  can’t eat anyhow during my lunch break, and if I choose to bring my own food so I don’t bottom out bloodsugar-wise, I will reduce my stamina but a significant amount due to having to lug the extra weight around while I walk and wander.  So this is something that seems like a clear “hell no” but I am reluctant to reply and say that.  I guess I’d like to better understand her point in inviting me.  I’ve discussed these limits with her, it’s come up in the context of work related social events that my boss’ boss’ boss holds periodically throughout the semester.  Does my boss think that my reluctance to attend those big boss events is based in something other than physical limitations, and does she therefore think that I’m like some faker debutante waiting for just the right invite to get off my ass and flounce off gleefully and spiritedly?  Or is she just being polite in inviting her big fat crippled worker along to this particular event?  Knowing which would help me figure out how to say “no”, with some grace and dignity.

recognition

My employer recently held an employee recognition event.  Notice that it’s not “appreciation”.  That isn’t directly relevant to this story, but I thought I’d mention it because it struck me as darkly humorous initially and a little more so after the event itself.  “Come on down to employee recognition!  See people you barely know get recognized for having worked here for a damned long time” went the gist of the many emails I got about it.  It was in my building, so  I thought it might be something I could go to and sit awkwardly at (see “awkward pumpkin painting”) and put in my face time at events.  Because it’s been required of me that I go to events.  It was put in writing even, back last spring.  It’s never been rescinded in writing, so although I find it burdensome (if not downright impossible) to go to most things and although I don’t know of another employee who has a written requirement to attend ALL events and functions, I’m honestly just not ready to sue.  So I try to go, when I can.  I assume if I don’t, I’ll get passed by for a raise again, seen as a poor team player, you know, all that.

But yesterday was busy.  We’re down a staff member in my office and while we do have a temp, we’ve still divided up some of the permanent position’s work among the permanent staff.  So I have other responsibilities and we’re heading into a bit of a busy time for me.  And we’re now interviewing (finally!) for the open job, and the interview schedule is messing up my schedule a bit.  I usually work from home Tuesdays and Thursdays but this past week and next I’m in all over the place.  So yesterday, despite the emails we had all gotten inviting us to recognize other employee’s recognition, I ended up working straight into the afternoon without giving this event another thought.  Until I went out for a break, at a time that I later realized was about an hour before the event started.  On my way back into the building, noticed they’d locked the accessible entrance.  “That’s odd,” I thought.  But then they had locked it the night before too.  The night before, it was late and I figured they just screwed up and locked the wrong door.  See, the front of my building has two doors.  A revolving door (not accessible) and an accessible, normal door.  The back of my building has a door too.  A non-accessible door due to it being up a flight of stairs from street level and having no button press-opener.  To get to the non-accessible back door, you take the elevator to the building’s second floor.  To get to the accessible front door, you go to the first floor.  Got it?  Ok, back to last night.

After encountering the locked accessible door again last night, and having to wait until no one was coming through the revolving door to use it (I don’t move fast enough for some people and have been clipped in these doors before, so I’ve stopped using them)…I thought “When I’m leaving tonight, I’ll go out on the first floor and ask the security guard if this locking the accessible door is a new thing.  If it is, I’ll drop a line to the building manager to let them know that’s not ok.  They’re pretty good about fixing things like this.”  Then I went back to my office and worked.

It turned out I worked well through the event without realizing it.  On my way out of the building, as the elevator neared the lower floors, I heard a lot of noise coming through the doors.  They opened on the second floor, which deposits you on a balcony/mezzanine level that looks out over the lobby and the accessible entrance, and I saw a big fancy looking event going on, people filling the lobby, little cocktail tables, music.  Ah, right.  The employee event.  “Ok,” I thought, “not going out that way then.  And I guess I know why that door was locked tonight.”  Making a note to follow up on the whole locked door thing,  I made my way out to the back, inaccessible door.  Still, I believed I had a choice in this.  I didn’t need the accessible door yesterday, so I chose to go out the back.  I was wrong, it turned out.  Because it turned out that even if I had needed it, I couldn’t have used the accessible entrance to my building to get out last night.

The security guard who was stationed at the back entrance was the regular.  He’s chatty.  We’ve chatted while I’m waiting for Mr. Patient to pick me up on cold nights when I don’t want to wait outside, or on nights when I’m feeling to bad to stand and wait.  The security guard was very animated last night.  He told me that they had shut down the front entrance of the building “without telling anyone!  They’re just sending people back here” he said, incredulous, “and those people are pissed!” he added.  He told me people had been “yelling in my face all night” because of the inconvenience of having to find their way to the back entrance to the building.  “One woman was freaking out because they shut off elevator access to the first floor, the elevator went down and the door wouldn’t open so she came out here and was screaming ‘what the hell!?  I was stuck in the elevator!'” (I doubt very much that she was screaming.  This is a young man in his twenties.  To him, any woman who is angry and verbal is likely seen as “screaming”, so I took it as a cultural hyperbole meant to convey the intensity of her emotional state).

Meanwhile, I’m thinking “that totally could’ve been me”.  “Uh, yeah, what about people with disabilities?” I asked him.

“Whaddya mean?” he said.

“I mean what if someone with a wheelchair or a brace or a walker wanted to get in…or out of the building tonight?  What are they supposed to do?”  He shrugged and gestured to the doors and the stairs that lay just beyond them.  “You’re kidding me, no plan?”

“Nope.  I guess carry them?” he said laughing.

I was pissed off.  I was personally pissed off because there are days when I HAVE to use the accessible entrance to get in and out of my building.  If was just a matter of them locking the door but with security there, and it was one of those days, I could ask to have it unlocked.  But they turned off the elevator.  No way to get down there even.

As I was in the car and going past the front entrance of the building, I saw that there was a cop standing in front of the accessible door, arms folded across his chest, looking imposing.  I suppose he was the one who was turning people away who were approaching the entrance from the street.  Man, it’s a good thing I didn’t know he was out there.  I have such authority issues, and I was so pissed.  I’d have been over to him in a flash, asking him to explain what the hell someone in a wheelchair was supposed to do.  Cops LOVE that kind of attitude, women “screaming” in their faces and what not.  Like I said, good thing I didn’t know he was there until I was safely separated from him by the car door, mechanical motion, and the busy street traffic.

I was pissed off on principle too.  I have seen people in wheelchairs and scooters in my building.  I know that they would have been left stranded, either on the sidewalk trying to get in or (possibly worse, I think) on the second floor without a way out.  I had troubling dreams last night about needing to use a guide dog and no one believing that I needed the dog.  I woke up a few hours after falling asleep, remembered the end of the day and the door thing, and was pissed off all over again.

So, not employee appreciation, recognition.  But apparently not even recognition for the disabled employees.

we apologize for the inconvenience…

As I continue to work with a chronic illness, I am developing a real phobia of the term “inconvenience”.  On the subway, “inconvenience” means impassable obstacles such as a steep mountain of stairs between you and the street.  At work, it translates into no food, pain, migraines, fatigue.

I was thinking last week about what I would paint or draw if I could paint or draw.  It would be a series of dyadic scenes, one side is “what you see” and the other is “what I see”.  Keyboard and desk on one side; torture device on the other.  Rambling path through a hilly, sunlit park with people on bicycles, babies in carriages, and children on roller skates on one side; scorched, Escheresque hellscape crawling with demons on the other.

I’m thinking about this today because we have a standing meeting that was rescheduled from its usual standing time of my work start time to a half hour earlier.  It is also on the other side of a steep, cobblestoned hill (the short path involving slippery marble steps…the long path involving hordes of clueless undergrads, perpetual sidewalk construction, and other “inconveniences”).  Our receptionist also scheduled me for a back to back, so I have a meeting at my office (on the other side of the hill) set for exactly when the prior meeting ends.  Not ok, since the prior meeting always goes long and it takes me twice as long as my colleagues to walk back to our building after.  And if I want lunch today, I will have to drag that with me all the way, hoping that it is not getting too warm for the hour and a half or more that it’s not refrigerated (remember, my soft food/liquid diet = soups and puddings).  So I guess it’s to be pain and fasting for me today.  We apologize for the inconvenience.

early alert

I am trying to see the bright side in all this medical malarkey that’s going on.  I started thinking of it with the gastroparesis and now I’m thinking of it in terms of the Reglan side effects.  I’m trying to see these things as more than just troubling symptoms and helpful signals from my body that things are not ok.

I have a habit of ignoring my body.  I’m actually a bit abusive to it.  This isn’t to say I haven’t taken care of it for vanity’s sake.  Like all well (or at least thoroughly) socialized women, I grew up caring about my appearance.  So I would go to the gym, not to be healthy but to feel better about how I looked.  I take care of my hair and skin, or at least try to.  I wear makeup.  I try to dress nicely, as much as the various symptoms will allow (i.e. no more heels for me due to the pains they elicit, long skirts help me keep cool in warm offices, etc.)  So add comfort to the list.  Comfort and vanity have been the two driving forces in what I will attend to in term of my body.  But just good health, caring for it like the precious thing that it is, not so much of a motivator for me in most of my life, now that I stop to think about it.

When I first get a new symptom, my reaction is to be very, very angry at my body.  I call it a bastard, a devil, a cruel and lazy partner I am saddled with.  I push it through even moments of obvious distress, if I think I can get away with it without sacrificing other things that are important to me.  My body is a means to an end.  It has never been a goal in and of itself.  What a change of perspective to consider it as something I need to and should take care of just for the sake of taking care of it.

This is contrary to messages we get socially.  “No pain, no gain”.  I grew up in the 70s and 80s.  The advent of fashionable “fitness” coincided with my adolescence.  What a model – the body is something to be mistrusted and abused in the name of pretty.  To quote a popular song from the period, “It’s better to look good than to feel good.”  And indeed, I look ok.  When I gained a bunch of weight on the progesterone therapy for my endometriosis back in 2003, people stopped me in the hallways to tell me how good I looked.  Must’ve been the flush in my cheeks from the chronic pulmonary problems the progesterone was giving me….never mind the hemorrhaging I had with my periods for those months that I was on that evil substance.  I looked good, I must’ve been doing something right!

When I subsequently lost all of that weight and then some after the GI problems started rearing up in 2004/2005, my dissertation advisor said “I wish I had what you have!” in reference to her own weight.  This from a woman who dressed like she shopped at the irregulars bin from the LL Bean cast offs store.  Never mind that I was slowly losing energy, becoming more susceptible to diseases, failing to make the grade in the PhD program because of countless delays that my poor health was wracking up.  I lost weight.  So culturally important.  I was not impressed with this comment at the time, but that reaction was just to share some of the fury I felt towards my unreliable body with my advisor for being an idiot and discounting how this limited me and pushed my goals increasingly out of reach.

Thinking of taking care of my body is not easy.  Today, I’m trying to see the boob reaction to my gastroparesis med as a gift.  As an early alert sign from my body that “hey, this isn’t ok.  This drug that only kind of works?  Yeah, it’s screwing things up royally in here.  You’re taking it so you don’t have heartburn and so you have less nausea so what?  So you can work?  Well in the meantime, you’re fucking us both up.  I’m hurting, please stop.”  The same goes for the GP.  I ignored, largely, the ramifications of my other autonomic symptoms.  It helped that there are any number of doctors out there who will not only neglect the import of these symptoms but actively encourage me to neglect it too.  But the GP is a lot less ignorable, discountable.  It is partly because it’s so new, I have lived with the really short syncope fuse for so long, I’ve adapted.  Not entirely, and it is progressing and I mourn that, but it just means doing MORE of what I have done in the past to accommodate.  With the GP, it’s a whole new ballgame.  New rules, new penalties for failure to play by them.  New constraints to explore and learn.  And all of it has been something I cursed my body for, every time I’ve had to say no to a snack or an outing.  Now, I’m trying to look at it – at least some of the time – as an important sign that I have to pay attention to.  It may never go away, and that thought does haunt me, but it’s having come on the scene means I now just HAVE to pay attention to my body’s messages.  I have to make sure I don’t have cancer, and I have to try to find and treat what’s causing it, even if that means eventually giving up a full time office job temporarily or permanently.

I can’t quite say thank you yet to my body.  But I can take on the responsibility for having neglected it for so long and I can try to start mending my ways.  I can try to start treating it like its something other than a plague, some whiny and spoiled child which fusses over nothing.  This is not nothing.

freedom not to choose

I recently had occasion to revisit Christine Miserandino’s excellent essay, The Spoon Theory.  Last night, after literally months of chasing his brother down to make plans for their dad’s 70th birthday, my husband finally had a talk with his brother about said plans.  A real, concrete talk.  This did not go well.  Post talk, my husband and I were sitting on the couch feeling drained, pissed off, sad, and well, just all kinds of bad.

Back up.

My brother in law had wanted to do an all out big hurrah for his dad’s birthday.  Despite my brother in law’s wife being pregnant with twins, a much sought after and difficult to attain pregnancy, he was talking trips to Europe in April.  April would have been four months after the kids were born.  I recall as recently as late last Fall, when his wife was huge with impending kids, he was still talking this nonsense.  “If he goes, if he goes ahead with this plan and leaves her alone with those babies to run off and have a booze and cigar fueled tour of Europe, he may as well pack ALL his shit because it’s gonna be on the curb when he gets home,” I told my husband.

Flash forward a bit, post babies but still winter.  Still months before dad’s birthday.  My brother in law realizes either than he doesn’t have the time or the money to make this trip.  Good.  Finally.  Sense!  But still, let’s go to a resort in the US!  Weekend at Bernies style!

I got sicker.  Brother in law got harder to get in touch with.  The time drew nearer.  His own plans just for his kids’ christening took forever to gel, an event that was roughly scheduled around their dad’s birthday.  Ok, so putting off the birthday event.  Doing it in the summer now.  And maybe more local.  My husband really tried to get together with his brother on this.  I planned to take time off so I wouldn’t need to try to get my sick ass into work on my own and use up a day’s spoons just in my commute.  “Just let me know when!” I said.

Vacation planning time came up at work.  At the time, my husband had only managed to nail his brother down to “it’ll be one of two weekends in July”.  I tried to plan around it, but it was tough.  I had to pick time off and we still didn’t know when it was happening, except that we knew it would involve a weekend.  Ok, so we figured they come in Thursday (and this was discussed with brother in law), go golfing locally Friday day after my husband gets me to work.  Then Saturday they head off to some golfy-area and stay at a hotel Saturday night, golfing all day Saturday and early Sunday.  Drinking, smoking cigars, etc.  Great.

Except that this isn’t what my brother in law “envisioned”.  Notice I didn’t say “planned” because people like him don’t plan.  They can’t be bothered to make the choices that planning entails.  When you are merely envisioning, you can have endless opportunities, possibilities.  When you plan, you will systematically eliminate all but one set of those possibilities, eventually destroying them.  Whole worlds of possibilities are gone when you finally commit to a plan, what is left is only that one potential world which you have committed to trying to attain.  My brother in law cannot handle this process.  He is a dreamy little dreamer, who is in total denial about his dreaminess.  I can handle dreamers who know they have a soft gooey center surrounded by a light flaky crust.  I can’t handle dreamers who think that they live in the real world, who drift through their days fueled by the privilege of not needing to choose, enabled by the people around them to continue to entertain countless, limitless possibilities to the consternation and detriment of anyone near them who actually needs to know what the eff is going on.

Yesterday, my husband sent my brother in law an itinerary.  Oh boy, not a thing to do to a dreamy little dreamer like him.  That got his attention.  Not that he called my husband.  No, my husband still had to cyber-stalk him all day to get a reply.  Finally, they spoke.  Brother in law revealed his massive disappointment in the plan my husband had concocted based on the limited and late input he got from and about my brother in law.  Input like dad telling my husband that brother in law actually wanted to come up Wednesday to Saturday because he had made work travel plans for the following Sunday or Monday.  Again, plans for {this or that}.  Not plans for this.  Or plans for that.   Last night, dreamy dreamer revealed his boozy smokey vision to my husband, communicating that he didn’t think that they should stay here for any part of it because they wanted to kick back, let loose, not worry about me and my problems….<needle scratch> 

Gosh darn it, cripple problems are no fun!

Not that those problems would go away, especially not if he took my husband out of the equation for work days that I now had to work because my brother in law couldn’t be bothered to commit to even planning let alone a plan back when even an outline of a plan would have given me the tools I needed to make my own plans.

This boy who pretends to be a man is one of the people I was thinking of when I wrote about blithering optimists.  And he’s been a source of actual strife for me in my sickness any time the practicalities of his sphere overlaps with mine.  I told my husband last night that they’d better plan to stay somewhere because I don’t want him in my house.  Brother in law has made it clear that if he is forced to stay here, he will either not respect my constraints (like needing to go to sleep, stretch my legs out on the couch, or eat when I need to) or he will respect them but with heaping helpings of resentment and disdain.  I don’t need that shit.  Apparently I can’t keep it out of my life, but I can keep it out of my home.

For a while now, I’ve been thinking of writing a “dear family and friends” letter.  My previous attempts at a narrative have ended up in 5 page single spaced .5 margin word documents that still are incomplete.  But those didn’t have a purpose other than cataloging, chronicling my illness.  I realize I’d have  to think about the point of this, because if it’s to communicate to friends and family what it’s like, if it’s to help manage their expectations in advance, then I need to be aware that there are people like my brother in law for whom it may just not matter anyhow.  We stand at opposite poles of the planning continuum and unlike Christine’s friend in her essay, my brother in law has not asked what it’s like for me to live like this and may not give a crap.  So if I do write this, I will write it with that audience in mind, with him standing in for all the not giving a shit people in my life.  And I will assume that if I choose to write it, it will be at least as much an exercise for myself as it is a letter to them.

caution

This week, I was told that I would  get several of the accommodations I had asked for at work.  Prior to this week, I’d been told that the review of some of my requests had been postponed indefinitely, and some of my requests had been just flat out denied without review.  With my body having learned the new trick of very delayed gastric emptying, it made for an exceptionally stressful 3 1/2 months.  The levels of despair I had at having a job that I had loved start to crumble around me while trying to take care of my decaying body, they were significant.  Last week, I saw someone at my husband’s employee assistance program for a referral to mental health.  Husband works at a BATH, I figured his EAP was more likely to have a good referral list than my employer.  Also, the degree of separation made me feel better about disclosing about work stuff.  And lastly, given what I’ve seen of my employer’s HR practices in my first year there, and especially these last few months, I didn’t have any sense that the EAP they had chosen would be better than a high school guidance counselor.  trip hazard caution sign

I’m glad I went.  I think what made me feel best about it was that I asked “what if the first person I see isn’t a good fit?”  I was told they wanted to hear feedback on that and if it wasn’t a good fit, they’d try to find someone else.  The day I went, I’d had a big, I guess what they call “come to jesus” talk with my boss.  The general theme, without getting into details I”d prefer not to on my blog, was that “this is not ok”.  I needed that counseling appointment after, believe me.  “What was the worst that could happen?” my husband asked me that morning on the way in to work.  “Well, it could end in tears and cops.”  Elaborating with the counselor:  I could run from the meeting crying and lock myself in my office and they’d have to call security to come take me out,”  “that’s not so bad….” says the counselor.  I laughed.  I don’t want to cry in front of them.  “why?”  Yeah, that’s a tough one.  Why does anyone not want to cry at work?  Or in front of people in general?  I don’t think that’s weird but it is tough to but words to why I don’t want to.

Little brother made someone cry at work this week.  He was at a doctor’s appointment and his supervisory staff decided to take a long lunch, he told me.  When he got back, there was bedlam – he was set upon by several employees at once with demands for this and that right now and outrage that “no one was here!”  The person who he made cry is sort of thin skinned I think.  I’ve met her, so I’m not basing this just on him.  That said, I think my brother would be really tough to work for.  I think he and my boss are similar in some regards, not the least of which is they both seem to think it’s ok to blow up at work.  I don’t.  I think you need to express when you’re angry or upset but you owe it to yourself and your coworkers to find a more productive way to handle that than what comes across as rage, either seething or explosive.  But as my brother put it:  “I offered for her to go home, I know she was upset.  Instead, she runs into the break room where everyone is…I mean come on.  At least go into the bathroom or something.  So now she’s done that, and everyone is like ‘oh god what did you do to her?’ and I’m like ‘you know what?  you only get to do that once and have that effect.  you can’t unring that bell.  you cry again any time in the next 5 years and everyone’s going to start thinking maybe you’re unstable.”

That about sums it up.  So even with good cause, that’s a pretty good summary of why not to cry at work, at least not visibly (or audibly, as I’ve been witness to sometimes…closed door but screaming and swearing and crying, oh boy).  Go out, take a walk, sit on a bench, clear your head.  Get therapy.  Talk to your peeps.  Post a blog.  but try to keep the waterworks out of the office if you can.  Unless someone died.

I’d like to say I am optimistic about work now, but I am not.  I want to be.  Maybe it’s because the same day I was told they’d try out some accommodations, some massive screwup happened that I am attached to (I didn’t cause it but I was a part of it).  I know that took the wind out of my sails a bit.  But I think the reason runs deeper.  My trust is broken there.  3 and 1/2 months of this, it takes a chunk out of you.  It leaves a mark.  So I proceed, with caution and with good faith and a desire for this to work, if not actual hope.

range of motion

This is not a good test for me.  It’s ok if it’s “how much can you move before it hurts?” although even that can be problematic since often, the hurting starts later, and by then it’s too late.  By the time it hurts, the provocation is long over and all I’m left with is the pain.

It came up at the doc’s office last week, although it’s a good analogy for the entire scenario of work right now. Last week, I got hurt at work.  The nitty gritty details make for a long story.   The upshot is that if I’d had accommodations in place, it would likely not have happened.  It involved doing something stupid, but something that everyone was expected to do.  An inconvenience for others, for me it was dangerous.  I had already suffered social judgement for my initial reaction to this set up from a coworker.  After that, on top of not having the formal support of my employer for things like this, I felt stuck, trapped, and like I had to try to put on a good face and just put up with this situation, like everyone else.

I really want to be like everyone else, at least when it comes to things like this.  This involved bounding over bags left in an unnecessarily narrow walkway in a poorly laid out room, executing various “silly walks” to get around the poorly laid out room, or scrunching up myself and my chair so that people could silly walk their behind me, while leaping over said bags.  But I am not, like everyone else.

It’s clear that part of this equation of injury is me.  Not the part where the set up was chosen for the room I worked in that day. But the part where I moved myself in and around this space.  I was constrained by the set up, but I was in charge of my own body – one could argue.  Unfortunately for that argument and for me, I have piss-poor proprioception.  I suspect that many hyperflexible/hypermobile people do.  You combine a physical environment that necessitates contortion with joints that move too far (or move in planes and at angles where they shouldn’t) and you have a recipe for injury.  So why didn’t I refuse?  Why not say “eff this, I’m sitting somewhere else or I’m leaving”?  Well, like I said, I had already gotten some shit for just being me (“you can’t sit there” a young man told me when I put my bag down on a chair while I took my coat off…hadn’t planned to sit in it, just had to put my bag down since I can’t hold the bag while extending the arms unless I’m looking for an ER visit.  This was only the start of a really unpleasant interaction.)  I’m under extra scrutiny at work on account of sick time, and that scrutiny has been extended by someone to things like whether or not I attend work social events so you can imagine how it would go over if it was reported that I walked out of an actual working (not socializing) event.  And lastly, while I have a general sense of  what I can’t do, for some things, I don’t know until I do them just how bad an idea they are.  I’ve been working on living by the motto of “just because you can doesn’t mean you SHOULD” when it comes to movements…like sitting on the couch with legs crossed up under me and reaching all the way down to the floor to retrieve something that fell and rolled under the coffee table.  Can do?  Yep.  Should do?  No.  Why not?

Here’s a little story, from way back before my autonomic nervous system decided to just check out (i.e. back when I was still relatively ok).

In college, in my psych of women class, we had a final exam in one of those big hall lectures.  The TA walked up and down the rows passing out the test.  My test got hit by a gust or something, and floated up off my little chair desk, settling down under the chair in the bleacher style seating in front of and below me.  Rather than get out of my chair and kneel down on the floor to retrieve it, or even get out and walk around to the next row down from me, what do I do?  If you guessed bent forward and reached way down with my go-go-gadget arm to get it, you are correct.  I did it though.  Range of motion.  And something went “PING!” in my shoulder.  I sat back up.  I thought “uh oh.  That hurt.  Hurts.  It’ll pass….nope.  Still hurts.  Hurts more actually.” and then the “no don’t pass out” mantra started.  It didn’t help.  I got up, because that’s a good thing to do when you feel faint and in pain.  And walked, hugging the wall, down to the front of the classroom, where I told the teacher and TA that I didn’t feel good.  I made it to the hall, then hit the floor.  All the way out.  Woke up wondering what my face was pressed on that was so nice and cold (linoleum).

The hurt at work last week was not as bad as the initial and relatively short lived pain from the college exam episode, oh thank god.  I think mostly because this time, when I felt the “PING” I stayed seated.  I stopped moving.  I held my iced coffee on my head and neck, oh cold cloth is not a myth btw.  Always makes me feel better to have something cold on my head and neck when I’m feeling faint.  And it passed, the faint.  The pain, unfortunately, stayed around a LOT longer this time.  I’m chalking that up to nearly 20 years of my body slowing going down the shitter.  I do not bounce back from a bad movement now.  I used to.  Used to run on my ankles, pop my hip in and out with ease, no problem, it was like a party game when I was a little bendy kid.  Now?  Definite problem.  Definite hurt.  And definite disability after.

I saw my doctor the day after hurting myself at work last week.  Sitting on the exam bed, I am asked to turn, first left then right “as far as you can….” “Um, yes, but I’m going to do this slowly and I’m stopping when I think it might hurt later if not now” I tell him.  So I start turning.  And turning.  And turning.  I’m about to stop on the left when he says.  “Ok, stop, stop stop….Jeeez, you still could work for Cirque du Soleil, couldn’t you?”  Yeah, and this is why range of motion is not a good test for me, I say.

This is extra crappy because since my gut has decided to launch an all out jihad on me, I am very reluctant to take narcotics or anti-spasmotics.  So it’s ice pack, tylenol, NSAIDs, and lido-patches.  Yes, lido-patches are not the best for us, I know.  I do respond to topical anesthetics, just not strongly.  So I put a whole patch on and while I can still feel pain, it’s not as bad.  It’s enough for me to get to sleep if I am very still and stay off the left side.  I am lucky.  The pain itself is not horrible.  It’s there, it’s like a little warning beacon not to bend or stretch or turn too quickly right now, and god help me if I carry something.  I put it at about a 7 at its worst, and it’s like a toothache.  Very concentrated.  I know I am lucky for that.  I am not lucky for having done it, and I’ve spent the days since getting hurt feeling very let down and screwed with by my employer.  To the point where I am making a formal statement to them this week that I am NOT ok with how they’re handling the accommodation request I made, and then starting the official state/fed complaint process.  I hate doing this – it’s a lot of work, a lot of paper, a lot of calling, and I worry for the effects on workplace harmony, but I think I have to because workplace harmony isn’t going to be helped by my hurting myself for their poor planning and negligence (or, if I’m feeling uncharitable, their intolerance and obfuscation).  But let me be clear here.  The stupid thing I did was complying with the demands of my employer.  I did it because without accommodations in place, I worry that I will be judged and evaluated negatively (and possibly penalized, socially or more formally) for failing to comply with demands or expectations.  It’s already happened once, so I’m not imagining that this threat is real.  But I need to learn to not care as much about that as I do about my body.  I wish they wouldn’t make it so hard for me to work WITH them on preserving my health and safety.  My old boss used to say, while perpetrating some truly horrible workplace behaviors on her employees, “You have to be flexible.”  And I’m starting to get that at this new job as well, although admittedly not (yet) to the same blood curdling degree of my former workplace.   And if this week taught me anything about being flexible for people who are refusing to budge for me, its that the range of motion and flexibility of my body is matched only by my will, and I need to firm it up a bit if I’d like to continue working or even living without incurring severe injury.

So that was my weekend.  And week, since that happened on Tuesday.  I spent Wednesday doing some work from home, then at the doc’s and radiology.  Thursday and Friday were rest days.  Yesterday, I cooked.  Have to, or I’ll have no food for the week.  I’m still not done.  Still have to make pudding.  God damn I’m sick of this.  Seeing the nutritionist on Monday.  I do not have high hopes – I want to, but I am trying not to get my hopes up too much since that disappointment is just too much.  Then Wednesday I am seeing a counselor to try to get a referral for mental health.  Boy do I need it right now!  Not in a good place.

I thought I’d post some lovely pictures of my arms and a movement that I can but probably shouldn’t do.  This elbow and hand hyperflexion does not hurt.  And I think it counts only as a little hypermobile because I’ve seen pictures of worse.  Note the pinky in the top picture.  I didn’t even know it did that.

Woman's hyperextended elbow.

Go go gadget arm…

coming out

Happy Pride season everyone!

Big Historic Northeastern City had its Gay Pride celebration last week, culminating in the big bash and parade this weekend.  Watched some nice photos post from friends on FB.

One of the first times I went into the city on my own (well, you know, with other girls just not with parental supervision), we came up from the subway to an amazingly colorful, emotionally vibrant, truly pride-inducing display in the street.  I had no idea what it was, except that there were some outrageously dressed folks who were clearly having one hell of a fun time.  I realized some time later that it was probably the Pride parade.  I wasn’t really very clued in to that aspect of culture at that age.  It was still very much a sub-culture in the early 80s, I myself wasn’t gay, and I and my peers were still too young to really be actively participating in this sort of event.  My own little brother had not come out yet although he did tell me that he realized he was gay very, very young….and I think we did too.  His love of fashion magazine models, pleadings for my sister and me to do his hair and makeup (boy wasn’t our Italian Irish father impressed to see his son, the only boy in the generation, presented in the living room with rouge, hair ribbons, and lipstick), and fascination with my sister’s Farrah Fawcett doll were perhaps the very early clues that he was not moving toward a traditionally straight male gender type.

A good friend who I have not been in touch with in a while contacted me this week to say hi, that he’s sometimes up in my area, and to inquire about maybe getting together for coffee.  I wrote back with a friendly message and I came out to him about my illness.  He wasn’t unaware of it as a progressing thing.  You can’t have known me in the last 10 years and not be at least somewhat aware of it.  However, my degree of disability has increased significantly since I last was in touch with him – to the point where getting together with people requires a ridiculous amount of logistical planning, and even then could end up canceled because I’m just too crappy that day.  I’d been considering writing a letter to my friends and family about this, a formalized sort of statement of “here’s what’s up with me”.  I hadn’t realized until I wrote this out in reply to my friend’s email on Pride weekend that what I’m doing is a sort of coming out.  There are some clear similarities, although some very stark differences too.

While sexual orientation other than girls who like (only)(properly masculine) boys and boys who like (only) (properly feminine) girls is not something I consider pathological, it is something a large number of people do.  And it is a state of being, increasingly seen as how you are and not how you choose to be (cultural universal, occurred in places and times when being gay could earn you a death sentence).  It is concealable.  And it is stigmatized.  I put that in separately from pathological because there are the “love the sinner, hate the sin” types who, I guess, would fall more into pathologizing the state or its expressions but who claim not to hate the person who embodies them.  I’m not sure that is possible, but I’m laying out a logical argument here so for the sake of logic, I’ll accept that the claim for this stance exists and add it to the list of less than supportive social responses to homosexuality/queer sexual orientation.

As with sexual orientation, when people see evidence of your sometimes concealable traits (here, chronic illness), they speculate.  They engage in a process of examining your motives, your being, whether you are bringing “misfortune” (in the case of sexual orientation, the misfortune is other people’s shitty reactions, in the case of chronic illness, it’s that and poor health) on yourself by bad behavior or just plain badness.  I’ve had times in my life where I have felt empowered and energetic enough to take on the job of educating people when I ran into this.  I am sort of tired of that now.  I’d just like to have a little bit of understanding, and lacking that, some respect.

What do I mean when I say respect?  One thing that I mean is that when I “come out”, whether it was by choice (as with my friend via email) or by circumstance (getting sick at work, having to tell someone “I can’t do that like that…I have to do it like this or not do it”), I do not want stupid silly sympathy.  Sympathy, as a slightly removed empathetic response to someone else’s apparent suffering or difficulty, is not a bad thing.  Sympathy that is dumb, that comes with a whole pile of invalidation and invalidization attached, that’s what I’m talking about.  I guess there’s a word for this, and it’s pity.  Pity is not helpful.  Pity allows people to write off the “object” of pity.  God, even the wording is invalidating!  We don’t talk about the object of our sympathy now, do we?  But back to respect.  Outside of pity, which is inherently disrespectful I think, at least how I’m defining it, there is recognition of the validity of the choices that this person is making; respect that they are, in most contexts, the best judge of what they can and can’t do.

This is what is lacking.  I know from my own experience “coming out” about other concealable, stigmatized things and from witnessing others’ experiences, that when someone comes out, the respect response is not only uncommon but rare.  And still….I do contemplate coming out.  Without it, it seems there is an increased chance of misunderstanding, and of lack of emotional or practical respect for your choices and ways of being due to – if nothing worse – social misattribution (see my post “not invisible” for a lot of rambling on that).

So I was just thinking.  If the process of coming out is one that is shared between people with chronic illnesses and people with other concealable, stigmatized traits like some sexual orientations, then does that mean that pride should extend to?  I don’t feel immediately comfortable with that.  Sex is, or at least can be, a good thing.  Love is wonderful.  taking a pride orientation for traits having to do with those domains strikes me as more reasonable than “being proud” of being sick.  I’m not proud of this.  But see, even as I think and write that I realize that the opposite of pride is shame.  And saying “I’m not proud of being sick” is very very close to saying “I am ashamed of being sick” and isn’t that what we struggle with?  Isn’t that basically the nugget at the center of what it means to be stigmatized?  Taking on shame, having shame imposed on you by others.  One means of combating that shame is coming out.  Keeping closeted, and it does require keeping because there’s active maintenance to it, is driven by shame, whether it’s actual internalized shame or fear of encountering others’ shaming behaviors in response to their awareness of (some element of) your “secret”.  And it’s tiresome and tiring.  And when the thing you’re keeping under wraps is a chronic illness, you really don’t have energy and extra resources for dealing with bullshit…so you have to choose. Which entails more bullshit?  Coming out or concealing?

What do you think?  Is it harder to come out or harder to maintain your “cover”?  If we want to move away from shame for being sick, what is the other option?  Dancing queens in the street with rainbow boas are nice but for me at least, this sort of response doesn’t quite seem to fit here.  As much as I may try to find some tiny silver lining here and there (“It makes me more empathetic”, “It helps me to come up with creative ways to do things”), I cannot find any cause whatsoever to celebrate my status as someone with a chronic illness.  I do not want to choose shame though.  What are the other options?  What did you choose, and how did you choose it?