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?

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8 Comments

  1. Gosh so true

    So much Shame

    Have you seen the potlandia episode with the allergy parade with the girl in the ambulance at the end? I guess that’d be me , except I’m allergic to the ambulance. Funny show, but I bawled hysterically and unexpectedly at that part

    I think you Rock. Sick or not. You should be able to lay out your limitations without judgement

    Sadly the Shame is everywhere and we can feel it from others without them even saying a word. Hurts a lot.

    Reply
    • I did see it and I did have a very strong reaction to that part. Although the “pad thai” part made me laugh…a lot.

      Thanks Ana, I appreciate the vote of rockingness. I’m trying to find ways not to feel super shitty emotionally, or at least not to take on other people’s crap. We’ll see. One idea was to start a group at work (I work at a college, lots of “groups”) but then the people who’d be solicited to come all would be exactly the people with the least time for extras, right?

      I recently got a notice from a conference I was going to attend asking that attendees refrain from wearing perfume and scented products out of respect for people with sensitivities. I know it doesn’t mean that someone wouldn’t have a reaction to someone else’s “scent free! fabric softener” but I thought at least it’s a start. And I thought of you.

      Reply
  2. Wow. Lot’s of good points here. I think the struggle with using the Gay Pride analogy is it’s a bit of an apples and oranges thing. What I mean is I can relate to Gay Pride due to the fact that I’m a minority and very proud of that. That’s just how I interpret it. The chronic illness side of me is different, however. I really don’t think pride can come from any horrid condition–it’s like having pride that you were a POW in the Hanoi Hilton, which is what I call my torturous body. Possibly, you can have pride in being a survivor of the hand you were dealt.

    I believe the coming out/staying in the closet is a catch Catch-22. Damned if you do; damned if you don’t. I completely relate to that. I’ve met people in random, social situations and the 1st question is always, “So, what do you do?”. I had a stock answer for years about what I used to do and that I now had X disease and can’t work and they literally would do a 180 and walk away! Then there were the “take an aspirin” comments and on and on. After 12 yrs… I just became a recluse–plus I have nothing in common with the people in the city. I really have more shame about not working since I was a workaholic and that is what really makes me avoid people and their questions and lack of empathy. Also why no one knows what happened to me and why you can’t find me online–the Witness Protection Program life. Sigh.

    Well, that’s my take on it.
    A

    Reply
    • Yes, you articulated the reason why the analogy of concealable stigma and “coming out” can’t extend from cultural/social/ethnic groupings to ones having to do with health status. I do like the idea of pride in survivorship though.

      I wonder if I have to leave my job, which is seeming more likely since the GP started, how I will handle that. I’m pretty sure I’m jobbed out at this point, i.e. I don’t know that I can even begin to muster the optimism needed to look for, land, and start a new one after the last two experiences. I’m already a recluse….the GP took care of the remaining vestiges of my social life.

      Reply
      • I hate to hear that, but I have NO idea how you are working still. I was literally the walking dead and when I think how I went to work (never even missed 1 day) and grad school at night and finished my last term with a 4.0 as always, it blows my mind. I had no idea of the concept of not working or quitting. It’s a trade-off that doesn’t come with a lot of benefits–you just get to be sick at home (or in a motel room) and since I didn’t even have my misdiagnosis then, I have a new full-time job of dealing with doctors, insurance, trips to the pharmacy and whatnot (I wasn’t even dealing with doctors as they had just dismissed me so I stopped going by ’02). You’re already doing that plus working, of course.

        Then, there’s SSDI, which pays nothing and takes yrs to get, but if you apply after leaving a full-time job, you’ll get more. This is where I screwed up, so learn from my mistake (I don’t think I even really knew what it was back then). You probably know much more just from your job. I kept trying and working $10/hr p/t jobs out here (disgusting w/my education/experience) so that was included into my SSDI benefit equation (plus work credits). It’s included as gainful employment, so I think they based it on the job where I made around $600/mo after taxes. They consider that gainful employment! $600 doesn’t even cover rent, let alone the expenses of being sick. Nice! This is why it’s better to just try to get SSDI vs. going the p/t route. What a stupid system! It’s like I screwed myslef for trying to still be productive! Well, at least you’ve worked f/t for so long–I had to stop just shy of 30! Just let me know if you go that route, as I did win my case w/o a lawyer so I got all my back-pay, not that I remember a whole lot now. I believe that seeing very good docs–I had been Dx’d in CA and saw a rheum (cash) at Cedars in LA–was key. Probably shouldn’t even write this, but my SSDI is for my misdiagnosis. Well, not my effin’ problem they screwed up for 12 years! I don’t hear from SS so will presume all is fine. Besides, does a misdiagnosis really leave your file after that long and 100 doctors later? I still have the same symptoms!

        Well, liked your post, regardless. I forgot to add that the part about little brother and your Irish-Italian dad was hysterical!!! I can imagine the whole scenario in my head. Lol! 🙂
        A

  3. So much paperwork. For all of this.

    Well, I’d like to stay working, as you had wanted to. I do not understand why it has to be all or nothing, either from the employer or from the government. There’s a concept for working with accommodations, it’s just not understood or supported. And making a complaint is a mountain of paperwork. I’m going to do the best I can. Just trying to decide about a lawyer. The fiscally anxious side of me says “you can’t afford a lawyer!” but the part of me that remembers going through my divorce “pro se” wonders whether it’s more appropriate to consider whether I can’t afford *not* to get a lawyer. The screwing you can get if you rely on good faith and then someone stops playing nice or even polite, it’s pretty bad.

    Reply
    • It is pretty much all or nothing. With permission, you can work, but your monthly income has to be lower (not sure of the exact amount) than your SSDI payment. I don’t know anyone who gets more than $1,000 in SSDI/mo. so you maybe you can make $850 or so (I knew someone who did this for awhile and their income was something along those lines). If you go over your max, then you are in trouble, You get put into a trial program where you are essentially working again (even if for $900/mo) and they allow 9 mos–or did–to see if you can pull it off before booting you out of the system. It just creats an endless cycle of poverty and unless you have practically no assets (the max was around $3k), you can’t apply for Medicaid, etc. I own a used car outright and have my dwindling savings still, so no help for me for doing the right thing! As you’re married, you won’t qualify for anything else. It’s really frustrating to those who are semi-functional, but due to my pain and sleep issues, I’m not. Unless a miracle occurs, I will never be able to work again. I get up at 7 pm (did today!) and my pain is like an 8, but think it’s really around 80! So, I just sit and rot in here for the most part.

      Per the lawyer, they take 25% of your back-pay (all the mos. you were waiting for a decision, which you get in a lump sum). That back-pay is what paid for my damn CXL surgery for my eyes! Anyway, that is also calculated in part on your last job (gainful employment), so that’s where I screwed up as mentioned. You don’t pay an attorney and if you lose, they don’t get a dime (like with personal injury). It’s paperwork, but doable, although I’m the type to do my own taxes. Lol. I think my case took over 2 yrs as I had to appeal (was denied at 1st like most). No lawyer would take my case as I was young and they wouldn’t get a lot of money AND they didn’t think I’d win w/my Dx, so I appealed on my own. No court or anything, just more paperwork. It really comes down to the state and how bogged down the system is. If I had still been in CA, I doubt I would have won.

      There you go in case you need it…

      Reply

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