Di Has Stories…

(and they’re all true)

Invisible Illness Bingo August 7, 2007

Filed under: being a sickie — Diana @ 11:50 am

This, this right here, is fucking fantastic.

And timely, as I was just thinking last night about how little even the people that love me the most understand chronic illness in general, and my illness in particular.

In the last few months, I’ve been sicker than at about any other time in the last 12 years since I started becoming symptomatic.  For many years, I was able to ignore the fact that I was sick….I’d hide out when I had symptoms, and make fun of them when I didn’t.  Most people have not seen me when I’m swelling, and I’m ok with that.  The few times that I do wander out into public are traumatic enough that I don’t want to repeat them very often.  It makes me have a deep respect for those who have disabilities that are visable all the time – at least I get a break sometimes.

Having an ‘invisible” illness is no walk in the park, either.  Even when I am not swelling, I feel the effects of my illness every minute of every day.  My body works much harder than yours does, and takes every day life more personally, if you will.  The rest of you can take a walk and not think much about it.  I have to consider:

  • Do I have the energy to get there and back?
  • Do I have an escape plan if I have overestimated my energy?
  • Will my feet swell during the walk?  Or after?
  • If they swell after, is there anything in the next day to day and a half that I need to NOT be swelling for?

Every chair is a source of ass swelling.  Every walk or time standing around means my feet are going to swell.  Every stressful situation, even a good one, has the possibility for me to wind up in the hospital with my throat closing up.  And even when there are no symptoms, I am always worried that they are just around the corner.

The other annoying part of being a sickie (besides the actual sick-being) is that EVERYONE knows more than I do about MY fantastically rare illness.   (An illness is considered “rare” if more than 1 in 10,000 people have it.  HAE affects 1 in 150,000 people.)  I am not just being a hypochondriac.  A new job/doctor/house/outfit is not going to make me better.  It’s not going anywhere.  I am working with the leading specialists in the field…there is NOTHING that you are going to think of that we haven’t thought of/examined/tried.  I know exactly what causes my illness, and I know that the chances are exactly 0.00000000% that there is anything that is going to “cure” me.  Nothing is going to start making me better other than replacing what I don’t have with that of other people who have been kind enough to donate.

In conclusion, let sick people be sick people.  I will admit that there are some people that get a charge out of being sick so that everyone pays attention to them.  99.99999% of sickies are not in that category.  We are sick.  We are doing what we can to live as well as we can.  We are not going to apologize for the fact that our bodies decided to attack us.   We need the people around us to be supportive, loving,  and stand up for us and our rights.  We’re tired of being second-class citizens, and we’re tired of being pushed around.

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