My cousin is getting married tomorrow. I am in the wedding and tomorrow is very
important to me. I have needed an
unbelievable amount of extra medication, including multiple doses of
epinephrine, to stay out of the hospital.
I am determined to make it through tomorrow but there is a chance that I
will end up in the hospital over the weekend.
I am just not stable and it’s frustrating because the stress is to
blame.
A lot of people have asked me why I chose not to just let
this go if it would make me so sick. This
is my answer.
When you are chronically ill, you put up with a lot on a
daily basis. A lot of this is at the hands of other people. This is a quick list of the slights I
regularly deal with due to my illness:
-People stare at you in public.
-People talk about you in public.
-People tell you that you don’t even look sick. OR
-People tell you that you look like crap.
-When I can’t hear what someone said and ask them to repeat
it, they say, “Oh, nevermind.” Because I
am not worth the effort it takes to repeat a couple of sentences.
-People stop inviting you to parties because you’re often
too sick to come. OR
-People stop inviting you to parties because “when you come,
everyone talks about you the whole time.”
-People sometimes try to become your friend not because they
like you but because they are curious about your illness in an inappropriate
way.
-People constantly give you advice on how to conduct your
life.
-People constantly insist that if you ate vegan/ believed in
the great thyroid conspiracy/ drew all your toxins out through your feet that
you would be healed and the fact that you refuse to do these things means that
you are to blame for your disease.
-People get offended when you bring your own food to events.
-People get offended when you can’t look less sick/ be less
sick on important occasions.
-People just drop out of your life because your illness is
too hard for them.
-People get mad when I eat regular food.
-People get mad when I eat low histamine food.
-People accuse me of exaggerating my illness or fabricating
it all together.
Many of these slights are small and quickly over, but they
happen day after day. When you are
chronically ill, the world sees you as being “other” and they treat you like
that. People comment on my life and my
disease constantly.
So when this happened, I was already frustrated with the way
that many people treat me now that I am sick.
Chronically ill people are often mistreated. This can be by family members, “friends,”
doctors, coworkers, perfect strangers.
We are often told that we are crazy.
We are often told that we are demanding when we ask for accommodations
to make us safe. We are often told that “everything
is not about us” when really I would give anything to not get the attention I
get because of this disease.
Chronically ill people are more likely to be abused, stolen
from and manipulated by the people close to them. I have been very fortunate to never have this
happen up until now. But it happens to
some of us a lot. And for some, there
isn’t a good way to make it stop.
I didn’t just let it go because what she did was wrong. The ensuing fallout has resulted in me and my
loved ones being harassed and threatened.
And yes, it is making me sick.
(Which is even more frustrating because they know that this is dangerous
for me, yet haven’t stopped.)
But I am tired of having to put up with this. I may be sick, but I’m not dead and I’m not
going to let people walk all over me.
This was egregious. I am not
going to let it go because it could mean that another sick person is someday
victimized by this person. I am not
going to let it go because I can’t control the way people treat me in every
interaction, but I can control the way I deal with this.
I know people read this blog to read about my life with mast
cell disease and this week has been an angry detour into my overwhelming sense
of betrayal. I will be returning to our
regularly scheduled programming shortly.
Thanks for reading and supporting me through this. I appreciate it sincerely.
Lisa, this is YOUR blog and even regularly scheduled programming gets interrupted for important breaking news. Still praying for you in this situation and that you have FUN at the wedding tomorrow!
ReplyDeleteAnger I find is a good emotion to have, finding balance within anger I find adds to my enjoyment of life....after all disappointment, whether expected or sideswiped unexpectedly all create stress....and for me, at times anger is the healthy choice. It's hard for me, as an adult, to identify which events are worthy of anger to keep myself in balance but I will let it out to avoid triggering health issues.I'm glad to hear you found your way during this time of disappointment. I'm new at dealing with my new symptoms over this past year, I've no clue why or how anyone would falsify having a mast cell disorder nor for what reason....but I do enjoy living well within my boundaries knowing whomever that person was for you, they are worse off than any of us dealing with any type of Mastocytosis. So back to our lives, I'm in the process of pondering the best response to tell a friend of mine....right after she says to me..."you're too young to have such health issues"...as if I have a choice....her statement is so incredulous I fear blowing her out of the water by saying...."do you know how stupid you sound"...should I say this, that's the anger I work hard to avoid. Not knowing what experience you just had and no need to know, as it has no value...I still wished to pipe in with what I hope are words of comfort. After all you are correct in that newly diagnosed ISM folks like me, need solid brave souls like you. Even though we all are different, I continue to glean solid information I need. Your bravery in the heat is beyond my capability at this time and I need to hear how you push your boundaries with success, it reminds me change is possible, each year can offer surprises that sustain us through the mundane times when stability escapes us.
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