The Impact of Illness...

Having a chronic illness changes everything in your life.  Having one that kicks in unexpectedly, becomes very serious and changes everything that you do changes everything about you.

How has EDS and all of the illness that followed changed me? Wow, where do you begin.  Lets start with the social impact.

When you are ill, your friends are there.  But, sadly, as things progress, many begin to drop out.  At first, I was hurt and angry.  At a time in my life when I needed it most, almost no one was there.  With time, I've let most of that hurt go and attempted to understand.  Maybe many people just don't know what to say.  Maybe some just can't handle hearing about your illness so often.  And maybe they just assume that other friends are checking in on you.  We are humans.  It is easy to not think about what isn't in front of you.  But, for those of us who are ill and left behind, its a lonely life.

There is a huge mental impact.  I have had a job of some sort since I was old enough to work.  I've always earned money, except for a short time when my children were very young.  Maybe it wasn't much, but I was out there doing it.  I've always been a multitasker, enjoyed the chaos around me.  Working, college, kids.  Now, I am very dependent on everyone else.  I miss working.  I was a nurse.  I cared for others.  I helped save lives.  Now, I have to bribe and pay my kids to help me clean the house because its almost too much.  I had to reevaluate how I saw myself.  I had to find new self worth.  I'm still working on that one.  Not there yet.  I have, however, learned to see people differently.  I like to think that I've learned to be more kind, a little more understanding.  I'm certainly trying to.

And then there is the financial impact, itself.  That one can be huge!  I have had two surgeries since November.  We have made four or five trips to Maryland for visits and surgeries in less than a year.  Maryland is 600 miles from us.  There is the cost of gas, motels, food, physicians and scans and the surgical costs.  I've costs my family thousands of dollars.  I am the woman who will hardly buy new shoes for herself because my kids may need something instead.  So, giving this money over to care for myself has been VERY hard.  And where does it end?  Financially, we will slowly sink.  I've not been allowed to work.  Yesterday, we reevaluated and it was decided that no, I am still not released for work.  They feel that it wouldn't be safe for me or my patients.  Not until we fix my brain.  I currently draw disability insurance from work.  It is equal to about half of my previous paycheck.  None of my bills go down, though.  So, we have to make it on a lot less money AND come up with the money to travel and pay my medical bills.  Thankfully, there have been some wonderful people, family and friends, who have done so much to help us.  But, it is never ending.  I have a trip coming next month and right now, I'm not sure how we'll manage it.  But, we will.

With a serious illness, you have to consider the possibility that you'll die.  No one likes to talk about that part.  I am a nurse, though.  I am not a stranger to death.  Just this year, I have saw so, so many stories of others with chiari who have passed away.  Young people.  People who should never have died.  This could be any of us.  We have to fight a system that doesn't understand our illness.  And, in my case, I had to come to terms with the possibility.  I am a realist, I can't sugar coat it for myself.  So, you accept the knowledge that it can happen, you fight hard to be sure that it doesn't and you live the best that you can.

So...there is a little insight for those that haven't been in these shoes.  A glimpse at the more private side.  Because, if I'm not going to let you truly know everything about Ehlers-Danlos and my other disorders, what is the point in doing this?