I’ve been suffering from an immune response disease for several years now.  It’s been a very new experience, travels in the land of pain and medicine.  My faith in medicine has been somewhat shaken.  But my faith in humanity is quite a bit higher than it was before.

One of my friends wrote “Medicine isn’t  science, and it confuses people.”

Science is always self correcting, if not perfect, and always interested in what it doesn’t know.  Science has been around since humans have lived on Earth.  Science is always learning something new, or finding out something we thought was true, is not.

Medicine has a long way to go…

Modern medicine is very young.

Basic hygiene practices and antibiotics save many lives.  Modern vaccinations have cut childhood death rates.  Many illnesses such as polio have been almost completely eradicated.

On the other hand, cancer is still a bitch.  Often the “longer survival” simply means “detected earlier”.

New exciting breakthroughs in medical care, including treatment of Parkinson disease and Alzheimer disease are all over the internet.  If you read beyond the splashy headline, you’ll see the words “tests in mice”.  My own doctor told me “We can cure almost anything in mice, these rarely turn into cures in humans.”

There is no pot of gold at the end of the rainbow, just like that internet promise of a cure is also empty.

My own concern with medicine started with my serious diagnosis.  I have the best care available in the world.  I also live with pain everyday.  Some days the pain is so unbearable I have to go and get a steroid shot.  This never cures the pain, it simply makes it bearable again.  I deal with pain enough that other routine illnesses are often masked, to the point of danger, as I’m so used to dealing with pain I ignore important signs of infections or injuries.

Medicine is young.  It can’t control pain beyond a certain point.  It can’t cure far too many deaths. It is pretty helpless with immune resistant diseases also.  These are managed, not cured.

We’re different. Really different.

My wonderful Rheumatologist was explaining my illness to me recently.  He simplified it by saying “You know who you are, but your body doesn’t. Your body doesn’t know who you are and is attacking you.  We have to tone down your immune response, but that leaves you vulnerable to other diseases.”  I looked at him and said “So basically, I am allergic to myself?”

BINGO!

This is well known and well researched, and the hope is that curing one immune  disease, or rather convincing our bodies we’re really harmless and should be loved not attacked, will cure most of them.  It’s a matter of not lowering our immunity, as is currently done, but changing the behavior of the immune system.

Immune systems can be very confusing…..

If this sounds as crazy to you as it does to me, imagine how crazy it sounds when someone says “I’m allergic to wi-fi”.

How about “I’m allergic to all plastic.”

“I’m allergic to the air in the office.”

“I’m allergic to anything processed.”

“I’m allergic to non organic food.”

“I’m allergic to modern life.”

It sounds crazy if I just jump in there and say:

“I’m allergic to myself!”

Even those allergic to modern day life, will look at you twice and say “That’s impossible! You can’t be allergic to  yourself.  That doesn’t make sense!”

This is what many Rheumatologists have to deal with in their practices.  People come in allergic to themselves, with well studied immune diseases, and refuse to believe the answer is just that they are really just allergic to themselves.  Now that is far more simplified that the true explanation of immune diseases.  You can’t take a Claritan like you can when your spouse brings home a cat.  You can’t just wash the bedding and or wait for Spring to be over.  You are stuck with you 24 hours a day.

People can’t take a diagnosis that doesn’t make sense. I’ve often felt one of the problems if Evolution is that it seems to work just well enough.

Hope all important. Acceptance is very difficult. Don’t like the diagnosis? Invent a new one!

Many of these immune diseases don’t become a real problem until the person is over the age of procreation.  My own illness didn’t really kick in until I was over age 50.  I’m not needed, so my having this disease isn’t a problem for the survival of the species.  In the past, people with my disease died at a young age, or simply took to bed. I would be bed ridden and in a nursing home if it were not for modern medications and a lot of support.  I take medications not only for my illness, but for the side effects of my illness and other complications caused by only being able to manage my disease, not cure it.

People do not like taking a lot of medication.

It’s not natural, and certainly I’m kept alive by a lot of chemicals.

Surely, there must be some other cause or explanation as medicine poorly controls many of these diseases, and most end in early death and much suffering and pain for those afflicted.  The progression process of many of these diseases also makes for a grim diagnosis.  People like hope.  Medicine does not give false hope.

Some of us adjust.  We look around and appreciate what we have done, and realize our health is our job now.   Medicine is indeed young.  We are not reaping the benefit of generations of cures.  We have advanced so much with communication and computers, but I always thought as a child we would have cured cancer by now.  Still, computers and technology hold the key in helping scientists study and test new treatments and perhaps cures.

Until then, people will walk into the doctors office and believe that they are allergic to this modern age.  Media scares about our food, our digestion, our weight and our modern technology makes sense to someone at war with their own body.  It seems far more plausible than “I’m allergic to myself.”

It’s easier to believe email makes you sick, rather than you are just sick of yourself!

I give great thanks to my own Rheumatologist who has taken the time to always update me about my illness.  I’m on several new drugs, gladly testing as my children are grown and Evolution is right – I’m not really needed the way parents of young children, or indeed children, with this illness are needed.  That’s where my faith in humanity comes from.

If caring could cure immune diseases, my doctor would have no patients.

People in the medical community that work in Neurology, Rheumatology and several other fields have few patients that are cured.  They are in it with their patients, just managing brutal illnesses with no cure yet.  Why anyone would go into such fields is beyond me, but I am certainly glad my doctors did choose medicine.

They are even nice to those that come in and say “I’m allergic to the internet.”