The Invisible Illness

Chronic Pain.  Fibromyalgia.  Chronic Fatigue Syndrome.  These, and many others, are known as invisible illnesses.  For those of us suffering from one or more of these, we completely understand the reason behind this title.  For others, the reason may not be quite as clear.  These conditions are known as invisible illnesses because you cannot look at those of us who suffer from them and see that they are there.  In fact, with many of these so-called invisible illnesses, there is not a specific test which can pinpoint the problem.  Because of this, many of us have been told that there is nothing wrong with us, or that we simply don't look sick.

There are times when I think it would be easier to have some sort of illness that everyone can see.  I almost wish, at times, that there was a neon sign over my head flashing "SICK PERSON" to everyone around me.  Most of the time, I use a cane to help me walk.  Without it, I can often only manage a few steps at a time.  You would think that the cane would be a sign to people that something isn't right.  Unfortunately, this is rarely the case.  I have gotten dirty looks, and have had people run into me in stores because I wasn't moving fast enough to suit them.  I frequently use one of the motorized carts provided by many stores.  If it wasn't for those carts, I wouldn't be able to get through the larger stores these days.  Because you look at me and see a normal person, people have given me more dirty looks, and have even made rude comments.

The person with an invisible illness doesn't just suffer at the hands of those who are uneducated about our conditions.  Many in the medical profession still refuse to acknowledge the existence of fibromyalgia, which has been proved to be a real condition.  As many of you know, the first time that I mentioned to a doctor that I thought I might have fibro, he looked at me and told that fibro didn't exist.  He went on to tell me that it was just something invented by doctor's to shut up hysterical, hypochondriacal women.  I was so shocked by his response that it took me almost 4 years to mention it to another doctor.

Because of the culture of drug abuse that thrives in this country, most of us with chronic pain conditions are looked upon with suspicion right out of the starting gate.  Emergency room personnel often assume that we are simply seeking pain medication.  In fact, they have a term they use for drug seekers - frequent flyers.  Now, there are many people out there who are seeking drugs.  I will never deny that.  However, those of us who truly suffer with a chronic pain condition must bear the brunt of the suffering caused by these people.  We are not only distrusted by emergency room personnel.  Often, the very doctors we go to for relief from the unrelenting pain we live with start out from a position of distrust.  I am talking about the pain management doctors.

Pain management doctor's are trained to treat people with chronic pain conditions.  Because of the abuse of the system, which is rampant, most of these doctor's now require that you sign a "Pain Contract".  This contract spells out many of the rules and regulations we as patients are expected to follow in order to receive the medication that allows us to function.  Some of the rules include using the same pharmacy, not getting pain medication from another doctor, monthly pill counts, and random urine tests.  I understand that the doctor's are trying to protect themselves.  I understand that those who do abuse the system make things difficult for the rest of us.  However, because of the system we live under today, you and your doctor are placed in more of an adversarial position than one of doctor and patient.  There is very little trust between the two.  If the patient makes even one mistake regarding this contract, they can be removed from the practice with little or no recourse.

Because pain management isn't a large specialty, finding a new doctor can, for some, be next to impossible.  And what rights do we have with regards to the doctor-patient relationship?  Very few, as far as I can see.  The minute you sign the Pain Contract, there is almost an assumption that you are guilty of something.  You feel as though the doctor, and the staff, are just waiting for you to screw up.  And even though you are told from the outset that you have the right to adequate pain control, you are afraid to tell the doctor that the medication he or she is giving you isn't working anymore.  There is always a fear that they will decide that you are an addict and take you off what little medication you are taking.

For those of us with an invisible, pain-related illness, the system is broken.  Because we suffer from chronic pain, we are looked upon by many as being weak, and quite often, as drug addicts.  Unlike the "big" diseases such as cancer, heart disease, and AIDS, we don't have large organizations advocating for us.  Quite often we are alone to fight an uphill battle that we cannot win.  Alone, we have no voice, but together, we can become a force to be reckoned with.  We need to contact our leaders on both a state and national level to make sure that our voices are heard.  We need to contact medical schools and offer to talk to upcoming classes of new doctor's to help them understand the things we are up against in our daily lives.  And we need to support one another, because right now, we are all we have.

The Holiday Doldrums

Well, the season has started.  We are now being bombarded with images of perfect families, gathered around turkeys and trees, looking completely happy to be there.  Our senses are being assaulted with Christmas Carols, ringing bells, and various wonderful smells.  Our televisions are already showing Christmas movies, and the commercials are whipping our children into a frenzy over which toy they will absolutely die without.  We are expected to greet everyone we see with a great, big smile, and a hearty "Happy Holidays!".  We have entered the land of forced cheerfulness and joy.

This is the time of year that I want to crawl into a hole and pull and rock over my head.  Like the famed ground hog, I feel like poking my head out of my hole every once in a while to see if its spring yet.  If you can't tell already, this is probably my least favorite time of year.  Cooking Thanksgiving dinner is an excruciatingly painful experience for me.  My husband and sons help as much as they can, but most of the time, they are parked in front of the T.V., watching the games, while I am slaving over a hot oven and stove, praying everything is ready at the same time.  By the time we eat, I just want to crawl into my recliner and down a handful of pain pills.

I don't get giddy at the sight of twinkling lights and the thought of putting up the Christmas tree and decorations fills me with dread.  For years, I have made a good show of it for the sake of my boys, but, if it wasn't for them, I would probably just ignore the whole thing.  The holidays have been depressing to me for almost as long as I can remember.  As a child and teenager, it never failed but that I was sick over Christmas.  Almost all of our family pictures from that time show me looking absolutely miserable.  I always appreciated the presents my family gave me, but once everything was opened, I felt such a let down, and I couldn't seem to come out of it.

I hate shopping, and I always have.  The very idea of going to a mall at this time of the year fills me with terror.  I have a mild form of agoraphobia, and all of those people pressed around me brings on a panic attack almost every time.  These days, I do most of my shopping online in order to avoid the crush.  Because my husband and I are both disabled, money is always tight.  This year is worse than usual, and I have no idea how I am going to get my boys anything for Christmas.  Whoever said that it's the thought that counts had no idea what they were talking about!  I know that anything I am able to do is going to be a disappointment for them, especially when they have to listen to their friends talk about the game systems, cars, computers, and the like which they got for Christmas.

From now until probably February, I am going to be depressed.  This is simply a fact of life.  Forget the holiday part of it; this time of year causes me excruciating pain.  The cold is almost more than I can bear anymore.  I have rods in my back from my fusion surgery, and when they get cold, it feels like tin foil touching a filling.  It's hard to get excited about celebrating anything when just walking to the bathroom hurts so very much.  If I had my way about it, the holidays would pass completely unnoticed in my world.  I know that probably sounds selfish to some, but it is the honest truth.

And so, this year, like every other year, I will fake it.  I will cook Thanksgiving dinner and pretend to enjoy it.  I will decorate the tree with a smile on my face.  I will send out a few Christmas cards and I will smile when I say "Merry Christmas".  I will buy what presents I can afford and pray that it's enough.  And, I will be miserable the entire time.  I wish that I wasn't like this, and I would do anything I could do to change it.  Unfortunately, I haven't figured out a way to get out of the Holiday Doldrums.  I just keep reminding myself that spring is around the corner, and I am thankful that the Holidays only come around once a year.

Facing Mortality

I turned fifty this year, and while it doesn't seem nearly as old as it once did, this age brings your mortality into a far more sharper focus.  I no longer believe that I'm going to live forever, nor do I think I'm going to die in the next ten years.  My life is different from my parents was at this age.  I'm still raising my children, and my parents had already entered that empty nest phase.  They were able to spend a month in Europe while I was in college and my sister was in high school.  I know I will never do that, although I wouldn't turn it down.

My mother turned 72 this year and she is in better health than I am, and yet the thought of losing her scares me more than the thought of my own death.  My mother is still my best friend and my biggest cheerleader, and the thought of not being able to just pick up the phone and call her whenever I want makes me very sad.  I would do anything to be able to move home just to spend the rest of her life being there for her, the way that she has always been there for me.  But right now, that just isn't possible.

My husband and I are both in poor health, even at this relatively young age.  As many of you know, my husband has a progressive neurological disease which is hereditary.  I constantly worry about what will happen when I am no longer able to care for him.  It is already getting to the point that I can't get him out for appointments and that sort of thing, because my disability has made lifting his wheelchair into and out of the car almost impossible.  My two children who are still at home help out more than they should have to right now, and I tell them daily how much I appreciate them.  However, my middle son will leave for college next fall, and my youngest one will only have two years of high school left and then he will be gone for college as well.  What will we do when it is just the two of us?

Right now, I am equally afraid of dying at a relatively young age, and of living to be a very old woman.  I don't want to be a burden to my boys.  I want them to be able to live productive, happy lives without having to worry about what to do about Mom and Dad.  I also worry about the possibility of them inheriting their father's condition.  While we had no way of knowing about it, I wonder if I would have had children if I knew we would possibly be handing this to them.  But, being selfish, I can't imagine my life without my beautiful boys.

I pray all the time that one day, I will wake up and my physical pain will be gone.  For the time being, that prayer isn't being answered.  I wonder, though, if I would be the woman that I am now had I never suffered with this chronic pain.  Would I be as empathetic towards others?  Would I reach out to people who suffer? Would I be sharing my life through my writings with others?  While I can't fully answer these questions, I would like to think that I would.  I also wonder if I would be thinking about my own mortality at fifty if I hadn't been given the life that I have now.