Wednesday, 8 February 2012

Chronic Illness and the Forgotten People.

forgotten people

So here we are. For almost 5 years the story was that my daughter had Acute Intermittent Porphyria - the same illness her father died from. To arrive at this decision she endured tons of emergency room visits, endless procedures and tests, and guinea pig medicine testing … all the while suffering excruciating pain and an uncertain outcome.

It has turned her life upside down, requiring her to surrender any plans she had for a normal life, her family, her children, her sanity …. She has one constant companion and its name is Porphyria.

Because Doctors know so little about the disease and there are no real treatments, no cure, little research and everyone is too busy worrying about the things they can do something about …. the sufferers of Porphyria are left to deal with many unkindnesses and judgements.

Society is prepared to deal with illness in two clearly defined modes. Someone can become tragically ill and can be nursed and supported into full recovery so we can all slap ourselves on the back, make heart warming You Tube presentations and emotional commercials for funding drives to raise more money for that illness. We accept this scenerio. It is our preference. BUT, in the event that does not work out, we will allow for someone to become tragically ill and then die. We can have a funeral, we can make heart wrenching You Tube presentations and the emotional commercials raise even more money. What society (aka "we") are not prepared to deal with in regards to illness, is the person who is chronically ill.

The chronically ill scare us most of all because they evidence our inability to buy our way out, to fix everything, to negotiate a successful solution, to move forward. The faces of the chronically ill mirror us all, taking its prisoners from all walks of life, all ages, all socio and economic backgrounds, all cultures and all religions.  It is the biggest unknown, and we demand the chronically ill be medicated and hidden away from us so that we do not mar our perfect day as we head to the gym for a quick work out before going to work and then meeting our loved ones for dinner.

The cries of the chronically ill in all our lives leave us feeling weak and afraid … those cries take on the quality of fingernails on a chalk board.

Trying to fight for the chronically ill is a losing battle against medical bureaucracy at its peak performance. You cannot win. The castle is surrounded by the armies of pharmacy and law. Battle wearied doctors and nurses who were perhaps recruited with visions of angels singing and light appearing as the lame man walked and the blind man sees have only two arms and so many hours and they have triaged all of us into those that can be helped and those that cannot. Perhaps it is not so much that they don't care but they can't care because if that was the quality that called them to the side of someone with a rare or chronic disease, they might never be free to leave and their life would be defined with one patient who may die anyway.

We will share tears with those who cry but our meters have timed limits that differs for each of us. Crying does not fix and there are holidays to plan and kids to get enrolled in dance class.

So the chronically ill learn to hide and the days turn into months, and then years, and soon they are the "scary" old woman who lives in that neglected house with all the cats and we only want to look at her if some television show goes in to show how she is hoarding and how disgusting she is so we can cluck as they haul her away to an institution.  She is indeed mentally ill... because pain, suffering and neglect, left untreated …. drives its captives endlessly towards insanity.

It is not that these people cease to be human … it is that humans cease to include these people.

Back to my daughter ....

After years of diagnosing her she turned the corner in her journey where they accused her of seeking attention and drugs. She was accused of being mentally unbalanced. She was ignored and spit upon. Those were the good days. There were days when the very people meant to care for her - doctors, nurses and paramedics actually inserted knives and twisted them … purposefully saying and doing things or withholding treatment to cause her more pain. I watched her retreating as they insisted it was not Porphyria at all and she cycled through all the testing for everything else under the sun until she was nothing more than a lab rat, running the maze from specialist to specialist who saw her, tested her, medicated her and washed their hands.

After some 5 years of that they are back to "why are they not treating you for Porphyria?" as if she has had any control, any say, in any of this. The truth is many of the tests and guinea pig treatments have actually made the porphyria worse, if that is what it is. She is past her 20's now, she is now entering her 30's. Her children are growing and it will still be years before they will be capable of understanding the dragon she fights every day of her life. She is no closer to an answer than she was some 11 years earlier when this started despite the exhaustive testing and exposure to the medical system ... and after all of this there is only one clear mantra from many of the doctors …. they blame her.

We never admit that medicine does not have all the answers or that doctors make mistakes.

I have heard doctors lie. I have seen them turn their backs and be cruel by anyone's standards. What I am missing in all of this is any common sense. Is it required that we surrender common sense when we enter university to get a medical degree?

Here are the facts. She tested positive for Porphyria - although the test is complicated it is my understanding there can be false negatives but not false positives. Her father died from the illness. It is hereditary. Nothing else has been proven to be the cause. The three years we tracked we found she attended emergency at the hospital 57 times in the one year, the second year - AFTER being given a heme transplant (a non-narcotic treatment for porphyria that sometimes works) she had only 3 visits and the third year she had 48 visits. That one year following the transplant she was fantastic. She took less meds, she was active. THAT was some 7-8 years ago and we have since been talking to medical walls in the offices of doctors and the examining rooms of hospitals BEGGING for them to give her another transplant. No-one says anything. They don't even say "no." It just does not happen.

Ours is one story in a sea of stories of people who are suffering without support and without hope. No-one knows more than me how taxing it is to care for someone who never gets better. The problem is that for those of us who do not have the luxury of walking away from our loved ones … we are only one person. If there were others, groups of people, who could share that burden …. it would be so much easier.  If there were words of kindness instead of judging or people suggesting they are faking it or all they need to do is get up and go for a walk or eat these nuts takes very little to offer a smile, a kind word ... a few minutes ... and it means everything to someone who is isolated in their misery.

I can't make a heart wrenching commercial or raise enough money for research but I can ask you to consider one thing…. When we walk away from one another we teach our children to walk away. When we make the choice to turn our back it makes it easier for the next person to turn their back. It is like the one person who first stands to give an ovation to a performer. Others will join him because he stands. It might be easy to put the person out of your mind that you turn on …. but when and if someone you love is in that position, you will sit alone at a bedside and wonder why all your friends and family have deserted you. You will ask why society does not care and seriously … the only answer will be your own mirrored reflection.


  1. Often destiny is an odyssey which take us long a very sad voyage,but at the end of the odyssey, who lived this kind of difficulties, will find himself stronger than before and will be able to fight against anything without fear and with a great courage.

  2. Thank you for sharing this. My heart goes out to your daughter. I deal with a chronic condition that falls between the cracks. Indeed, one is either destitute or fine. There's no grey area. By getting through the mundane tasks and maintaining routine it's too easy for people to think there's nothing to be concerned about. Yet, what else is there to do but get through the day?

    I hope you find solutions with your daughter.
    I found you via SheWrites.

  3. I am so sad to read this because I know how true it is. We see it all the time with children and adults with disabilities being marginalized and people with chronic illnesses eventually being blamed for their own diseases. We are simply not willing to admit that we can't 'fix' everything to our liking and so the things that remain unfixed have to be tucked away in the closet. I am so sorry that your daughter deals with this and I hope that she can find a compassionate physician who can help her at least feel hopeful.

  4. TY Ladies for your comments and compassion. There are so many people and I think almost every family has someone amongst them that suffers. I see how Virtual Worlds can open a window of socialization for these people - and the internet - but it is hard to feel a hug from a computer :)