| Story Tip Sheet |
| You
can help raise awareness of scleroderma or related illnesses and provide support to others by sharing your patient, caregiver,
or survivor story. |
|
| Attitude Session |
| The stories that have touched me the
most deeply have always been the simple stories, told from
the heart of "real" people. Forget everything you ever learned in English class. Few of us are professional
writers, but all of us care about you and the story you have
to tell. |
| So assume that we'll all be reading
your story through the eyes of love, and simply write as
though this was a letter to a dear friend. Your paper won't
be graded, and please remember that our most favorite stories
are those which are real, not perfect. |
| Getting Started |
| Often it is the first sentence which
is the hardest, and after that the story starts flowing.
So here are some "starter" sentence ideas. But the rule of thumb for writer's block is to just start writing anything at all to start engaging the brain in story-writing. |
| 1. Hello, my name is __________,
and I was diagnosed with _________ about _______ weeks/months/years
ago. The first symptom I was aware of was ___________. |
| 2. I'll never forget the moment when
I was first diagnosed with _______________. |
| 3. I am newly diagnosed with __________,
and have so many questions still. I would love to find a
pen pal who shares some similar interests. Let me tell you
a bit about myself.... |
| 4. Life has never been the same since
my (wife/spouse/daughter/aunt) was diagnosed with _______________, |
| 5. _____________ is the hardest time
of the year for me, because that's when my (spouse, child,
daughter, friend) passed away from ___________ , |
| Continuing the Story |
| Whenever you are stumped, just dive
into these questions for an idea of more things to cover.
You certainly do not have to answer all these questions in
your story; just use these for jump-starting your story if
it starts to dwindle before you feel its done to your satisfaction.
(Caregivers, please adapt the question ideas as needed.) |
| Where were you born? |
| What have you done for a living? |
| Where do you live now? |
| What are your hobbies? |
| What is your main diagnosis? And
your other ones? |
| What was your first symptom or flare
like? |
| What are your symptoms, and how do
they affect you on a daily basis? |
| How long did it take you to get properly
diagnosed? |
| Did you have any "interesting" experiences
being non- or mis- diagnosed? |
| Have you had trouble finding doctors
knowledgeable about your illness? |
| How have your friends and family
reacted to your illness? |
| What's the most idiotic, uncaring
thing someone has told you about your illness? |
| Have you had to quit work or go on
disability? What was that like? |
| Are there things you can no longer
do because of your illness? |
| Do you go to support groups? If so,
how have they benefited you? |
| What feelings have you gone through
since your illness began? |
| Tell us about your family members,
and how they have coped with this. |
| What things have helped you adapt
to the illness? |
| Do you feel sad, or angry, or frustrated
with the illness? If so, please share it. |
| How do you feel about the future?
Hopeful? Apprehensive? Scared witless? |
| Do you do any volunteer activities? |
| Have you had any treatments which
were helpful, or harmful? |
| Have you had any surgeries? |
| Which symptoms trouble you the most? |
| Do you have a favorite quote, or
slogan, which you would like to share? |
