I think abled people really underestimate the amount of mental and emotional effort, not to mention actual physical risk, that goes into assessing whether a situation is safe for a disabled person.  If there is some element of everyday life that challenges our health (a trauma trigger, a chemical sensitivity, a food allergy, a migraine trigger) then we have spent a great deal of effort to set up our lives to avoid it as much as possible.  When we are presented with a situation outside of our safe space, we have to assess it carefully.

And guess what: our safe spaces are often quite small.  So every time we go out and interact with the rest of the world, we have to be on guard.  Watching carefully for warnings, bracing ourselves against the possibility of an injury, rehearsing what to do (how to get out of the situation, where our meds are, what to tell bystanders if we need help). Yes, it is exhausting.

So when you ask us to deliberately leave that safe space -- to watch a clip which might relate to a trauma, to eat food that we aren’t absolutely sure is safe, to enter an environment which may have the wrong kind of stimulus -- you are asking us to perform a strenuous task.  Sure, we might do that sort of thing on our own sometimes.  But that’s on our own terms, when we feel we have the bandwidth to deal with it and any possible repercussions, or we feel the risk is worth it.  When you ask us to do it at other times, we may not feel up to it.  We may refuse.  That’s not because we don’t believe you when you say it’s an awesome restaurant/movie/club.  It’s because we don’t feel up to being an unpaid bodyguard for ourselves that day. Please respect that.

Okay.  When I’m at a gathering where people are going to have a meal, and you offer me something, when I say “That’s okay, I have food sensitivities, I’ll handle it myself” and you come back with an offer of accommodation, that’s charming.  Thank you for being accepting and gracious.

But when I follow that with “Thank you, but I brought my own food because I’m really difficult to feed”, please take that as an answer.  Do not insist. Do not take it as a slight against your abilities as a host. Do not “take that as a personal challenge”.  I can’t spare the spoons to look after both myself and your tender feelings.  I will become increasingly less polite as I attempt to enforce my boundaries, and that is never a good thing in friendly social situations.

I am not here to present you with interesting culinary challenges.  I am not here to give you a chance to experiment.  I am not here as a prop so you can demonstrate how good a host you are.

Please respect me and take “no” for an answer.

With regards, Your Friendly Neighborhood Person With Food Issues

Chronic pain is

quietly making breakfast when all I really want to do is sit on the floor and howl from the pain... but that would distress the housemates.

Medical gatekeepers can all GDIAF.

Man proposes, Chronic Illness disposes. #updatedquotes

I have an appointment with my specialist today, and I realized I’m already braced and defensive.  sigh

Reminder: he’s not my boss.  He’s not my manager.  He’s not my legal guardian.  He’s not my professor.  He can’t fire/flunk/evict me.  I don’t have to justify my choices to him, though he does need to be informed, and he’s entitled to at least a brief explanation.

He’s a consultant I am voluntarily coming to for advice, and I can accept or reject that advice as I see fit.  I don’t need his approval, I just need to be able to work with him on the problem at hand.  And the solution doesn’t have to be exactly what he proposes.  After all, I’m the one out here where the rubber hits the road, dealing with the complications that life always introduces. I’ll implement plans as I see fit.

Oh, and I get to express my own disapproval if he treats me like I’m too young, too ignorant, or too sick to know what I’m doing.  After all, he’s the one who doesn’t actually read the emails I send him, just skims the first half dozen words and flicks off a reply.

I have several blogs on my Tumblr feed full of trans men showing off the results of their top surgery, and other topless photos (because hey, if you can, why not?)  And that’s awesome, since I’ll be getting top surgery, and it helps to normalize the scars and post-op care and all that.

But as a fat person, it’s really hard sometimes looking at all those lean muscular bodies and knowing I’ll never look like that.  I’m built short and wide, not a lot I can do about that, even if I were to start taking long-term testosterone I’d still be a stocky dude.  Something something German/Scottish peasant stock.  Good for long lean winters.

And as a disabled person it’s doubly hard, because I would love to work out 5 days a week like some of these people, and get better musculature and feel fitter.  I loved doing regular workouts many years ago, particularly weightlifting.  But I know for a fact that my body can’t stand up to that sort of routine.

I don’t feel like my gender is less valid -- I am who I am -- but I feel kind of left out, and I feel like my post-op photos won’t elicit the same kind of awe and celebration as the ones I’m seeing.  I’ll just be a pale dumpy enby with chest scars, big deal.  I’m not getting the surgery just so I can post selfies, or because of how people view me in general, but it still hurts some.

But I’ll still post selfies of my post-op recovery.  Because if I feel left out, there are other fat and disabled people who feel exactly the same way, and I can make sure that at least a few of the pics that cross their dash are of someone who looks like them.  Loving and being proud of my body is more difficult with chronic illness, but I can celebrate getting closer to a body I really want to live in.  And that’s why I’ll be smiling.

Me, waking up: OMG it’s noon already. I don’t think I’ll be able to leave the house today because I feel like crap.  My friends are going out hiking, and working, and doing normal stuff... I’m so lazy and weak.  I’m pathetic.

Me, a moment later: Hang on a minute.  I just woke up with pain which is an 8 out of 10 on my scale.  That would probably have most other people crying and screaming to be taken to the ER.  I took a Tylenol, checked out stuff on my phone until I felt a little better, and now I’m going to go make breakfast while walking around on two perpetually-sprained feet.  I’ve got a bunch of useful things I can do today without taxing my system, because I know my limits and how to work within them.  I’ll have my friends swing by here, they’ll understand if I can’t go out.  And tomorrow I’ll wake up and see whether I’m in better shape.

I’m not weak or pathetic.  I’m strong.  I’m a mf badass.  Because I do this every damn day.  And I don’t let it get in the way of having a great time.

On the plus side, I’m in far, far less pain than I’ve been for the last couple of weeks.  My feet are working better, too.  I can feel my stamina building up, now that it’s no longer sapped by a constant inflammatory flare.

On the minus side, this improvement is requiring an extended recuperation period -- sleep 9-10 hours, eat, nap, eat some more, nap, eat, go to bed again.  So I’m sort of having to have faith that this will result in more productivity in the long run, while putting everything on the back burner right now.

It’s also helping to remind me why I shouldn’t feel bad that I don’t have steady employment.  Periods like this are unpredictable, unavoidable, and bad for business.  Welcome to life with chronic illness.