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The Emotional Side of PH
One woman’s thoughts on learning to cope with Pulmonary Hypertension.
By Cheryl Switzer
Cheryl is the President of PHCentral. She is also the author of an ongoing personal journal
in the Patient Diary Section.
When you were handed the diagnosis - pulmonary hypertension -
chances are, you had never heard of the disease. The doctor may
have attempted to explain aspects of PH to you, but it probably
did not amount to much. You may have heard words that made your
knees weak and your head swim, and in pretty short order your doctor
walked out of the room.
You were just one of many patients your doctor had scheduled to
see that day. Your time was up. It was bye, bye until your next
visit in three months. Yikes.
What if, at the end of your appointment, your doctor had paused
- hand poised on the doorknob - and said, “I’m sure
you have questions and your emotions are probably running pretty
high too. Our emotional support team leader will be here in a
few minutes. He’ll be able to help you get a better understanding
of this disease and get connected into the PH community.”
Well, that did not happen, right? No, you were left alone to sort
this mess out on your own.
My doctor walked out on me for the first time, on June 15, 2000.
I was ejected from my two-day hospital stay with a diagnosis I
barely understood. I had been given the 2-5 year speech and discharged.
All of my doctors went away on vacation. How nice for them, I thought.
How lovely for them.
My closest friends wanted to understand what was wrong with me
and I didn’t know what to tell them. I did not know nearly
enough about the disease to explain it well. I only knew I was
terrified and my disease was very, very serious.
It was a rough beginning and I’m certain my story is not
unique. Most of us walk out of our doctor’s offices or hospital
rooms shell-shocked and after a crash course in basic PH, we must
get dressed and face the world.
So, what do you tell people about this newfangled disease?
When someone tells us they have cancer, we have an immediate understanding
- albeit limited - of some of what that involves. If we feel comfortable,
we might ask about their energy level, possible chemo or radiation
therapy, what stage they are in, if there might be surgery and
so on. Cancer has been discussed openly in our society for a number
of years as have heart disease, diabetes and a host of other diseases.
That’s simply not the case with Pulmonary Hypertension. Not
now, not yet.
When I am asked what my medical problem is, I have learned to
say something generic. I may say simply, that I have lung problems,
smile vaguely and leave it at that. Often that suffices. If they
want to know more and I tell them I have pulmonary hypertension,
I usually get a very quizzical look. And if I tell them more, “er,
well, PH is technically an increase in pressure in the pulm artery,
and, er, it makes it difficult for the lungs to get enough oxygen
enriched blood from the right side of the heart”, the quizzical
look remains. It’s too technical and they still don’t
know what it all means.
If you’re a Flolan user, with your secret pump and rosy
cheeks, your friends and acquaintances might assume you’re
just fine. If they know about the pump at all, they’ll assume
it “fixes” you. You have a disease but because you
look fine, you must feel fine, right?
If you’re a full-time oxygen user, this too may be seen
as a “fix”. While it is true that the oxygen helps
people feel better, it does not restore one to health.
Acquaintances don’t need to know all the nitty gritty about
PH. You learn to say what you can get by with and leave it at that.
It creates a chasm, of course, but there’s no way around
it. It just is.
Close friends and family can be more of a challenge. Some want
to know every detail while others prefer to know less. With those
close to you, you may be asked to take the daily quiz. “And
how do you feel today, good, pretty good, poor? How did you sleep?” Some
others’ might prefer to forget you’re a PH’er
altogether. You have to remind these people why it is you can’t
go snorkeling with them next week.
When I told a close friend recently that I was particularly tired
one day, she wanted to know “why?” Healthy people get
tired in response to something they have done - a hard day at the
office, for example. PH’ers may be tired “just because”.
Of course, there is an underlying physiological reason, but I don’t
know what it is. So I’ve learned to say, “Just because.
It’s part of the disease.”
Another close friend, who admits she does not want to know very
much about PH, thinks I should walk more. She believes that, like
healthy people, PH’ers will benefit from aerobic exercise.
I’ve told my friend this is not so, that I should only do
what I feel I can do without becoming short-of-breath. I know this
does not quite compute as she continues to push me to walk more.
I placed a little post on one of the message boards recently to
see how other people were faring with their friends and family.
Some of the comments I received in response are recorded below.
“My family doesn't understand…. Friends, either.
If someone asks a question and I try to explain, I just get basically
a blank look. I'm finding out that it is a very lonely illness.”
“My experience is that not many people get it. I didn't
even get it for a while. I was always the one that never got
sick. That's what's so nice about being able to come to this
board :)
There are lots of people here who 'get it' :)”
My Dear, You’re looking so well!
If we can walk at a reasonable pace and have good color, people
will - even though they’ve heard you’ve been ill -
rush to tell us how wonderful we look. It gets old and some of
us take offense at it once in awhile, but over time, you just learn
to nod and say thank you. There’s nothing else to do.
One woman’s post says it very well.
“They want very much for me to be healthy and strong.
Thinking otherwise is scary. Guess that is normal, but it is
hard for us.
Lonely.”
I think when we’re told we look well and there’s some
information out there to the contrary, it could be interpreted
as meaning, “you can’t be THAT sick.” When I
hear it, I feel it’s a signal for me to buck up, to forget
about my little PH problems whatever they might be, and just get
on with it.
The Other Energy Crisis
Some PH’ers continue to work at jobs outside the home after
diagnosis and a number of them have written about being misunderstood
at the job. If an employer and / or co-workers don’t understand
that you have a chronic disease that places limits on your energy
levels, you may be perceived as a lazy worker. Some PH’ers
are forced out or fired outright.
Even at home, there may be pressure for a PH’er to continue
to take care of a family, do chores, and cook meals. Some spouses
may not be used to pitching in.
I’ve stopped tidying up as much around my own house and
I know some will see this as proof of my laziness. I do not do
busy work anymore and a little mess no longer bothers me. If House
Beautiful Magazine rang my bell, they’d never go through
with the shoot. There are too many piles of paper lying around
and too many bread crumbs on the kitchen floor. Nobody ever died
from over exposure to bread crumbs.
That nasty S-O-B.
Don’t you get tired of trying to keep up with fast walkers?
Being chronically short-of-breath is more than just a nuisance,
it’s not good for our hearts. If you’re sporting an
oxygen tank, your friends may actually remember to slow down the
pace, but if your PH is hidden from view, you’re probably
still struggling.
Before I was diagnosed, I had stopped picking up wind blown papers
in front of our house. The moment I bent over, I would become very
short-of-breath so I began to walk past the trash. If we were walking
together, I would ask my husband to pick up the stuff, he’d
shoot me a look that said, “What, you’re too good to
pick up trash?”
When we were at one of my doctor appointments, my physician explained
how bending over makes PH’ers particularly winded. My husband
attended that meeting.
If you’re overweight, you may have heard doctors as well
as others tell you it’s all about your weight. They tell
you that your SOB would improve greatly if you lost some pounds.
Shortness-of-breath is part and parcel of this disease no matter
what your scale registers. You have to go slow and keep it under
control even when you’re dying to run with the pack. That’s
just the way it is.
The burden of Proof.
Some friends and family may choose to believe you are well no
matter how much information you give them.
I’ve taken my husband to some of my doctor appointments
where I’ve asked some gritty questions and received equally
gritty answers. I have turned to him afterward and asked if he
had heard this or that? Do you understand now how serious this
is? He will counter with something else my doctor might have said
outright or alluded to, something slightly hopeful. He tells me
that I don’t know what will happen. He chooses to believe
what is true of most PH patients is not true of me. Yes, I have
the disease, but nothing bad will happen to me for at least twenty
years or more.
One other friend reported the same phenomenon. For a long time,
her husband did not even believe she had PH despite her diagnosis.
He thought the doctors were wrong.
I don’t think any of us benefit from denial or a Pollyanna
view of things. It’s an extra burden when people closest
to you don’t believe you and don’t acknowledge what
is real. It makes you a little crazier than you need to be.
Feelings about Disability.
Some of us, in our prime money making, middle years, give up jobs
we love because of our PH diagnosis. Suddenly we’re no longer
defined by what we do. We’ve moved into another category,
that of the impaired.
Applying for Social Security benefits early seemed fine until
I considered that I was asking to be dis-abled. I also knew once
I applied, I might have a fight on my hands. If the benefits were
denied, then SS would be saying they thought I was too healthy
and if I received approval with no hassle, that I was on death’s
door. Emotionally, it was a lose lose set-up.
Tune in, log on, hang out.
As you all well know, at the present time there is no Emotional Support Team on the payroll of any medical facility. It’s a lovely idea and many of us could use the help, but it may just remain a lovely idea forever.
It’s catch as catch can.
Thank goodness for sites like PHC where connections are made, information disseminated and personal stories shared. I can’t imagine my life without it.
April 1, 2003
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