Stones With Fair Colors; navigating the world of chronic illness


 For some odd reason, I have yet to discover, we believe this.  Everyone around us believes it.  If I had a dime for every time someone said, "Well, good thing you are used to it."  I would be living a much different life.  
So, why after the day in and day out don't we get used to this?
You can't get used to something that never stays the same.  It's never the same fever, the same blood count, the same old infection.  Rare disease means you rarely experience the same day twice.'s what you do get used to:

  • You get used to nothing going as planned in a day
  • You get used to living on few hours of sleep
  • You get used to holding your breath without even realizing it
  • You get used to the ever growing to-do list that never gets to-done
  • You get used to settling 
  • You get used to the feeling of overwhelm
  • You get used to scarcity
  • You get used to being alone

You get the picture!  We get used to getting by, chasing a life we think we are missing out on or wish we had instead.  Just because you do something over and over, doesn't mean it is second nature, occurring without a thought.  In many ways, it's harder than ever face the unknowns on the heels of our shadow.
If you're lucky, you learn to adapt and adjust...become nimble.  Do you have a favorite way you adapt as you face the unknown terrain of rare disease, chronic illness and trauma?


Integrating Chronic illness

The integration of chronic illness, or adverse conditions into our mainstream life is one of the hardest things to least for me.  Perhaps you can relate.  

From the early moments, when it became painfully obvious we were not going to have that picture perfect life I had dreamed of, I struggled to handle the disease.  It seemed like a wayward child, wreaking havoc on the quiet life I had planned.  Every time I turned my back, it was emptying my life of order in the other room.  I couldn't keep up and swore to myself; my kids that I would not allow it to define us.  I went to such lengths to ignore the disease, I could have easily been accused of being in denial.  

 When my kids would go in for their annual bone marrow biopsies, we would force our amazing nurses into dress ups and the doctor would give in and wear a princess crown for the procedure, even though he was not the princess crown  type.  As they would begin to stir from the anesthesia, the same princess crown doctor would hide fart machines under their sheets and remotely 'wake' them up!  The whole event became a day of fun and games.   As we left yet another doctor's office, I would remind my kids, "You're fine.  This is nothing."  Hoping in my breaking heart that they would actually believe me, and they did!  For a good long while, their disease was nothing to them.  It seemed that would last forever.  

As they grew and life became more complicated, it was harder and harder to keep the disease from consuming at least a part of every day.  People around us became perplexed and I would hear things like...'Weren't they sick last month?' 'Do you ever do anything besides go to doctors?' 'Maybe if you stopped taking them to the doctor, they would actually get better.'   I know most of these comments came from the struggle to be empathetic but they were enough to draw a line of dread.  

I began distancing myself from people I knew could never understand but even at that, my most trusted friends became tired of the drama, despite my best efforts to downplay the disease every chance I got.  I began making excuses about why I couldn't meet up for a girls night or movie.  It would be too painful to listen to all the  other mothers talk about dance class and soccer practice and all I could contribute was how great the nurse was who drew blood this week.   Life became so disconnected and compartmentalized.  

I think the integration of our chronic challenges is a universal problem.  We want more than anything to be normal...but we aren't.  We want to have a well rounded and balanced life...but we can't.   We want to belong but we don't. 

This is such an important subject, that the National Institute of Health did a phenomenological inquiry  into how one could integrate their life of chronic illness into the other parts of their life. Not many answers have emerged  but the 4 main areas that are the most difficult to integrate are:

  1. Confronting loss
  2. Handling fluctuating emotions
  3. Making changes
  4. Gaining control in an altered life direction. 

For me, it helps to consider my perspective.  If I measure my life against the make believe life I grew up with in my head, then integration becomes all the harder.  If I can find purpose and make sense of this crazy chronic life, our outlook improves.   This is a topic we will explore further in future articles.   How do you integrate all the good, the bad and the ugly into one beautiful weaving of your life?


The World of Rare and Chronic Illness

Did you know there are 6000-8000 rare diseases in the world?  That seems like a big number, so why does it feel like you're the only one?  6-8000 amounts to roughly 6% of the global population.  Not such a big number now, is it?

Rare disease is a complex situation.  We hear the rumblings of a rare disease and for a moment, we think, 'Man, sucks to be you!' and then we move along to more important and critical moments in our day.  For the one living out their life on the unwritten pages of scientific research, it feels a little less fleeting. 

While it may seem harsh to say, it's true...medicine, science, even politics typically ignore the situation of rare disease.  Insurance companies have a special place for us, it's called 'High Risk'.  They aren't wrong.

Having a rare disease is risky.  Highly Risky. The burden of care spans not just weeks or months but years!  It's a lifetime commitment for the individual who is sick, the parents or parent who cares for the child, siblings, sometimes extended family members,  neighbors, friends, even a community.  Everything changes with a chronic illness...

  • Work patterns have to be adjusted to accommodate hospital and provider visits
  • Income often changes and not in self made millionaire kind of ways
  • Relationships can change, become stressed, even deteriorate, resulting in many single parent homes with a rare,  chronically ill child or children.
  • Parents are required to have a specialist level of "Health Literacy" and the care giving skills of a registered nurse. 
  • Resources of all varieties are limited; financial, emotional, physical and mental.

In the Disability and Health Journal, Volume 8, Issue 4 from October 2015, they outline the commonly cited needs of parents who give care to a child with a rare and chronic illness.  They are as follows:

  1. Social needs.  Rare disease often leads to dwindling numbers of supportive friends and relatives which leads to isolation and disconnection.
  2. Information needs.  Often, medical resources, skilled care and long term research is sub-par.  The parent makes due or does without, often at the cost of quality of life for the child and the family. 
  3. Emotional Stress.  Fear, anxiety, depression and changes in the nervous system lead to a state of complex trauma and the individual is constantly in high alert.
  4. Guilt and Shame.  Feelings of inadequacy threaten the caregiver and the child daily. 
  5. Uncertainty about future healthcare needs and costs to obtain care.
  6. Declining health of the parent/caregiver.

We live in such a small world, thanks to the ever changing terrain of technology.   With very little effort, and the touch of a button or two, we can connect to the private world of others with a similar , rare disease.  This can often be a welcome balm of relief because, for quite possibly the first time ...ever...we have found a place to belong, not just fit in.   Care must be taken in this arena as well.  Often, even with the people we assume understand our plight, we can find it hard to generalize our individual culture of disease. 

There is no way around, the world of rare disease.  We can't get over it, we can only go through it.  More often than not, we will face moments of going through it alone, in our own unique way.  If we engage it, with the same energy we approach the joys of life, we will conquer with triumph, the path set before us. 


Gravity Problems


The problem with chronic illness, is that it's just so chronic.  


I remember so clearly, in the early days of our diagnosis, all the well meaning intentions of people who cared.

 At one point, the kids were a little older, and one of their teachers caught wind of our predicament.  Sometime, in the same week,  a case of some exotic berry juice arrived with the promise of healing all things; everything!  By now, I had learned to smirk it off and express gratitude for their thoughtfulness. 

Now, consider gravity for a moment.  We all live with it.  We know it's part of living in this world and I don't think there is a person alive who spends their day, day in and day out, fighting against gravity; cursing it's existence under their breath and reminding everyone they see, how annoyed they are with gravity. 

There is very little you can do to change the effects of gravity and so it is with the rare disease process.   There are offerings here and there to relieve uncomfortable symptoms.  You can feed your body important nutrients to bolster the good health you do have, you can maintain vigilance to survey for additional complications,  but the bottom line is, there are few things you can do to reverse disease and chronic illness.  It's a gravity kind of problem. 

We can either fight against it, curse it under our breath, tell everyone we see what a royal pain 'gravity' is, or we can accept it.  

That's a great big word!  Accept. 

It can be hard to say and harder to do and the mere understanding that disease is a 'gravity problem' doesn't make it any easier but it's a place to start.   Honestly, it's a concept I still struggle with, even 27 years later!  Living with a rare disease is so lonely.  So isolating, and unlike gravity, it's hard to go about your day hardly thinking about it but it's something I have to intentionally consider each day.  

We have a gravity problem- a really crappy disease but there is so much more to experience in life than gravity!  What about all the things we do that keep us, well...grounded?

The answer to this question is different for everyone and believe me, it's a journey of discovery.  Acceptance doesn't come all at once but ...what tiny thing can you do to keep yourself grounded, in the moment, in spite of a chronic illness? How can you create meaning within the framework of the life you've been given?


The Rear View Mirror

Sometimes...It seems that life is better understood when looking back.  

So, I do a lot of that...looking back.  My kids are older now and I often consider how we managed the early days of disease; where we were and how far we've come.   One backward glance and the stuttering self talk shouts in our brain...I should have.  If only.  I wish. Why didn't I...?  The permutations stretch across our minds with no end in sight.  

The early days, I felt completely paralyzed with unbelief.  A diagnosis that happens to other people , not to me or my children.   The medical community wasn't much help in the way they sized up the situation.

  "They'll probably live to about 17 or 18 years of age." they would say.


That number became the ball drop of my life. Every birthday or milestone was grounded in least at first.  For several months, I lived under that glass ceiling I felt we could never rise above, and it was dark and lonely and depressing and I went to great lengths to feel all the nothingness I could, but simultaneously fighting to live.  If nothing else, the news of a rare or serious disease provides endless puzzling days of oxymoron fun. 

I don't know the exact moment, but the Universe gave a gentle nudge and I stumbled into a poem written by Gwendolyn  Brooks-

"Exhaust the little moment. Soon it dies. And be it gash or gold it will not come again in this identical guise."

This altered the course I was on.   Every day was still a struggle, but every day , every minute was exhausted.  Nothing else mattered but my kids.  We embraced the little ordinary moments and made the best of the worst.  I protected them from their reality the best I could, and when the disease bullied its way into their little tender lives, I was their buoy, their life preserver, the shock absorber and we held on together.

You can always look back and find enough to criticize but to look back and say with all the confidence you can pretend to have...I did the best I could.  That's all you can do. 

I have learned this...

There's a space, in the moment, between reality and perspective and it can be dark and murky and hard to wade through.  Sometimes, we confuse 'what if's ' to be truth.   It's helpful, I've learned to exhale the worry and for one little minute, find meaning in that moment.  Find a sliver of joy, a tender mercy and perspective that provides a trifle of hope. 

Finding humor along the way...our emotional support 'human' who tags along at times.
Finding humor along the way...our emotional support 'human' who tags along at times.