Dear Doctor,
It’s hard for me to sit and tell
you how I’m feeling. It’s hard for me to explain my pain. I live with it every
day. I work through it. I struggle with it. I ignore a lot of it. It’s hard for
me to just tell you because most people don’t really want to know. I understand
it’s your job to know, but it’s become my job to deal with it. It’s become my
job not to tell people how I “Really” am when they ask “How are you?”
Sometimes you look at me like I’m
crazy. Maybe you don’t, but that’s how it feels. So many doctors have judged
me. So many have tried to deny my pain and the struggle I’m in. So many place
their own feelings on me. They think I am depressed because maybe they would be
if they lived with my struggle. I’m not. I’m actually in a good place. Please
keep your mind open to the fact that I do know my own body and I do know what I’m
feeling.
I’ve been sick long enough now
that usually I recognize what is wrong before you do. I’m sorry. I live in this
body. If I come to you for help then something is REALLY wrong, because I don’t
cry out anymore over every little thing. I’m grateful for days when my pain is
a 5 and not an 8 or better. Keep in mind, I don't even remember a 0. My normal is a 5. If I come to you hurting and asking for help, then
I’m really in a bad way. I suffer from long term CHRONIC pain. I don’t ask for
help for anything less than a 7. I’m used to those days.
I know it’s your job to help me
when you can, but please remember that my whole life (at least the part that’s
been spent with these illnesses) has been a job of learning HOW to live with
these illnesses. My life has become a job of living. If you can give me some
quality, that’s really all I desire.
Now let’s be real for a second.
There are times, especially when I’m in a bad flare, that I’m going to be
depressed for a bit. There are times when I’m going to be negative and crabby.
I don’t like having these things. I don’t like that there isn’t anything I can
do to permanently rid myself of them. But I’ve accepted it. Just because I have
an off day doesn’t mean I need anti-depressants. I’ve struggled with depression
before and I’ve even needed meds for it before but a bad day or a bad week
doesn’t mean I’m there again. Please trust that I will tell you if I get there.
I have come to a place in my life
where I just want to live today and enjoy today. Long term planning is a thing
of the past for me and well it should be because I never know what tomorrow is
going to be like for me. So please understand that I don’t want 1001 tests to
make sure there isn’t something else wrong
with me. Trust me when I say the list is already long enough. I promise to do
my best to get some tests done once in a while, mostly to satisfy your needs.
If something new crops up I promise to address it and take your advice. But I
have lived with these illnesses a long time. I know them in and out, mostly,
and I’ve come to acceptance. Acceptance allows me to live and be happy.
Acceptance allows me to LIVE. And with your help I can live and have a bit of
quality to that life. But the 1001 specialists and test only serve to remind me
how much is wrong. I don’t need a reminder that I have a list of diagnoses that
there is no “cure” for.
These are all things I cannot say
to you, but need to be said. I need you to understand. I need you to care that
today is what matters to me. I need you to work with me and MY needs. I promise
to try to satisfy some of your needs or requirements if you can just help me
not to be medically overwhelmed. And that is what it does when we try to deal
with too much at once. If you need me to have a test or see a specialist,
please tell me why. Explain it to me and then listen to how I feel about it.
Talk with me and let’s make decisions about MY body and MY care together.
I live with CHRONIC, LONG TERM,
illnesses. I don’t like it. I didn’t ask for it. And, honestly, I’m doing my
best to live with it all and not let it take me out of the game. I think the
most important thing you could take from this letter is that I need you to work
WITH ME and talk TO ME. Don’t work ON ME and talk AT ME. I am old enough to
remember the days when one only went to the doctor when they needed to and I
wish I still had that luxury, but these illnesses mean we have to see each
other a LOT more often. So please work with me as a team and I will work with
you.
Thank you.
Chronic Illness Patient
Chronic Illness Patient
