Why I'm not letting this go

I have been having a pretty rough week.  In addition to being betrayed by someone who was a friend, one of the people involved just will not leave my friends and me alone.  Leave us alone.  Leave me alone.

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.