This was originally posted on July 12, 2012. Again, I stress that I am not minimizing anyone’s battle with cancer. I was lost and no one seemed to truly understand what I was going through because what I was going through was not accepted or understood like cancer.
Back in the middle of this illness as I was losing friendships, losing my self and realizing not very many people really understood what I was going through, I began comparing my illness to someone with cancer. What I wrote was in no way meant to minimize cancer (I have had my fair share of cancer scares.).
Not it’s not cancer
Cancer patients take treatments and either
are cured or die at the end of so many months
I don’t want to have cancer
I don’t want the treatments but am not
afraid to die
I will not die but how much
better will I get – there is
No, it’s not cancer
It is mold and chemical sensitivity
Cancer patients, at least in the beginning,
can go out to the mall, to movies, to visit a friend
go on trips and stay in hotels
I cannot go do all these things
and when I finish treatment
my limitations will not change
It is not cancer
Cancer patients are understood
because their disease is understood
My disease is not understood by
Few can fathom the world I have
been forced to live in.
Few can understand that mere mold
can be so devastating
It is not cancer
My body is not ravaged by it
My body has been ravaged
by mycotoxins – which
ironically can cause cancer
I will not die and leave
this world for a spiritual one
I will leave this world for a world of
shelter, loneliness, and isolation
I will give up my “things” for ones
less beautiful and comfortable
I will give up my pictures and
collections in trade
for their memories
I will give up my lunches out with the girls
for a bowl of beans at home
No it is not cancer
But a different sort of cancer has taken
my life away and left me
caged and feeling very alone
A friend who also has suffered with the ravages of mold exposure and the loss of friendships, dealt with the isolation, and fought back recently sent me the following link. While the link deals with what to expect when you are diagnosed with cancer, a lot of the same things apply to having this illness. I was truly moved by what the author wrote.
When I first was disabled by MCS my son said at least you don’t have cancer. At the same time I had a positive pap. I understood everything you said. Luckily I don’t have cancer after 4 retests. I still do have MCS — when I started my blog I didn’t want it to me all about that — but apparently it is my purpose and with purpose comes passion and the defeat of loneliness. I added a page to my site today lifeinthecitywithafuture.wordpress.com listing bloggers that understand the isolation of invisible illnesses. I have added a link to your site. If for some reason you do not want the link just let me know.
Colleen – Thank you very much. I will definitely check out your page.
I have been told countless times by doctors, “Well, at least you don’t have cancer.”
But my condition is still debilitating and isolating.
It was the first and only time I ever heard it but I clung to it when everything else was falling apart. I understand the isolation very well.