When I was a child, I had a pediatrician I loved. Her name
was Dr. Valencia, and she was the sweetest and most opinionated little Filipina
lady you could ever meet. She saw me through my problems with asthma and
allergies, and was probably credited with saving my life a time or two. Every
time I went in to see her, she would sit behind her desk and lean back and talk
to me like she had all the time in the world.
“Listen to your mother,” she demanded over and over. “You’ll
regret it if you don’t listen to your parents.”
After puberty when I began to have the symptoms of
autoimmune problems, she had no idea what was wrong with me. And since we were
in a small rural community, pretty far away from any city of any size, there
wasn’t anyone she could send me to in order to get to the bottom of it. So she
did her best to treat my symptoms. And though she couldn’t diagnose what was
ailing me, her care went a long way in seeing me through.
As a young adult, after moving to a city, I was able to be
diagnosed and treated for ulcerative colitis. I respected and trusted my
gastroenterologist. Dr. Subler followed all the traditional protocols of lots
of procedures and tests and medications as treatment for this autoimmune
disease, but I lived with the less than ideal results because I liked him. I
would come into his office, and he would sit and talk to me about life. We
would share what we were going through. He always cared about what I was
experiencing and wanted to alleviate any suffering I was having. I never
doubted that for a second.
After Dr. Subler moved away, I had two more
gastroenterologists I loved. They cared about me, they did their best, and I
trusted them.
Unfortunately, they both left the practice as well. And I
entered the decade of my pregnancies, which for me caused my ulcerative colitis
to all but disappear. If I began to have problems, after a little research and
a few supplements and diet and lifestyle changes, I seemed to have everything
under control. I thought I had figured out the cure, and I was set for life.
But my success didn’t last. When the positive effects of
reproduction began to wear off a few years ago, I went back in search of a doctor.
Because that’s what you do. But I found in the years I’d been having babies,
things had begun to change in the world of specialists. I was suddenly in a
production line of patients, being pushed through a factory-like list of
procedures. When I would try to discuss the realities of autoimmune disease and
the fact that medications and tests don’t work, I would be quickly dismissed or
lectured at. When I would put off making appointments, I would get a letter
saying I was being dismissed as a patient for not following the will of the
doctor. Disheartened, I went my own way to take on the responsibility of
autoimmune disease on my own, as so many like me have done.
Autoimmune disease is hard. It’s hard to figure out what to
do, because what might work at one point may not work again in the future. And
there are so many variables that we have no personal control over, like the
weather or stress or environment. We can do everything right, and yet still
suffer.
My symptoms intensified in the past couple years, and
dragging my feet all the way, I went back to the doctor at the urging of my
husband. I found a wonderful GP, actually a friend from church going all the
way back to our teenage years. And once again I was sitting in the room with a
doctor who truly cared, who wanted to help, who didn’t mind sitting and
listening and taking her time to carefully decide how to proceed. She sent me
to a new gastroenterologist we both hoped would be a better fit than the last
one.
In July of last year, I called to make the first
appointment. I waited two months to actually see the doctor. When I arrived in
her office, I was greeted by an unfamiliar doctor, a young man who told me it
was his first day as an intern. He was friendly enough, but he simply read
through a list of questions. He went to confer with the doctor, who literally
stepped into the examination room for five minutes. She gave me a checklist of
tests that she would be performing that I should schedule, and brushed off my
concerns about my inability to prepare for one of them. She was gone in a
flurry of white.
Months went by as I waited for the tests she wanted done. (One
of them was canceled once because she was taking a vacation to Europe.) In the
end, by December, I had finally completed them (and was completely right about
my inability to adequately be prepared for one of them, through no lack of
trying.) Her verdict was sent to me via email. I was to take meds (that I had
already told her I don’t see any results from.) She would no longer be seeing
me (no explanation given) and suggested I call three other doctors for further
treatment.
If this wasn’t discouraging enough, the bills from the two
procedures she had prescribed (that she had barely addressed the results of)
ended up costing us over $1000 after insurance paid all they were of a mind to
pay.
And I was back at square one, with no improvement in my
health after six months of pursuing traditional medical help.
Why do I tell my story? Because I hate doctors and the
medical field and believe that we should depend completely on herbs and oils
and vegetables for our health? Not at all. I still have had far more experience
with caring people in the medical field than I have had negative. And beyond
that, I’ve gone the other way and went to an integrative doctor who tried to
treat my problems through supplements and diet changes, and though I did
everything she instructed over a period of several years, I saw very little
improvement in my health. And the reality was that insurance didn’t like paying
for her services, either.
So what’s the answer for those of us with bodies who can’t
seem to tolerate life? Who have conflicting health concerns that sometimes make
us feel as if we are going completely crazy? Are there any solid answers for
living with autoimmune conditions?
I’m not claiming to have any concrete answers that will
change our lives. I think part of having an autoimmune disease is coming to the
conclusion that our lives will always be more difficult than others’.
We will not be able to do it all. We will have to rest, stay home, be
still, avoid stress and eat a strict diet.
We will have to learn to depend on our own good choices and research.
We will have to find out, by trial and error, what helps and what makes no
difference.
We will have to be disciplined to keep our bodies in shape even when
the thought of moving makes us want to cry.
We will have to patient when flares interrupt our plans, our dreams,
and cause us to disappoint those we love.
We will have to find something greater to live for than health. We will
have to learn to smile and move on when others tell us we just aren’t trying
hard enough, or we are unwilling to be helped.
This life is hard. Autoimmune disease is one way the
darkness of this world is revealed. Our world and our bodies are wearing out.
We are beginning to understand the verse in the Bible that says all of creation
is groaning, waiting for God to make everything right.
But that being said, we can persevere. Autoimmune disease is
no excuse to curl up in a ball and give up on everything. Pressing against
adversity is what makes us stronger, both mentally and physically. Our despair
shouldn’t go on continually or become a habit. At some point we must pick
ourselves up, claim God’s promises that he will sustain us and accomplish his
purposes for us, and we must go on and defy the odds.
Some practical advice that is likely to do some amount of good:
Eat God made foods.
Eat in balance.
Take rests from eating.
Drink water.
Be in
the sunlight and fresh air as much as you can.
Move every day, and increase the
intensity of your movement little by little.
Find your passion.
Be still and
hear God’s voice, and tell him your every thought and feeling.
Rest.
Find ways
to declutter your schedule and have more down time.
Enjoy relationships and
pursue what is inspiring.
Make deliberate steps to avoid the stress and chaos
of this overcomplicated and greedy society.
Live for others.
Show compassion
and mercy.
Wherever you are, ask what you can do to improve it.
Autoimmune disease probably won’t be cured without an act of
God. But we can learn to exist anyway. To fully live. Don’t let it be an excuse
that causes you to give up or become bitter.
What about you? Do you have any ways of coping with
autoimmune problems? Have you found anything that helps? Share in the comments.
And thank you for reading! I pray God’s best for you in this new year!
