3 Ways to Live With A {Scary} Chronic Illness

My interview with Meredith Vieira on living with chronic illness {in the family} made me think back to my family’s time when we lived through my daughter, Nava’s, chronic condition of ulcerative colitis.  Until it get managed well with the proper medicines, it was obviously difficult and emotionally painful to watch a loved one (in this case an 11 year old child) writhe in pain, wake up in the middle of the night crying out on blood-streaked sheets and lose a lot of weight.

During the acute stage of her illness, there was no escaping the fact that life revolved around sickness.  It was only when it began to finally get under control with steroids and then maintained with colitis medication that I could strive towards regaining some semblance of normalcy in our home.  I did not want illness to define Nava nor our family’s life.  Yes, it was a component of her and our life but it wasn’t the entirety.  I wanted to make life bigger and broader than the colitis.

It became relatively easy to do once the acuteness of the disease went into quiet mode with a fairly small regimen of daily pills, for which Navi became completely responsible.   For six years the illness kept a low profile; Nava was fine and healthy.  And then all hell broke loose when a major flare-up that couldn’t be controlled set off a medical crisis (which I’ve written much about).

Fast forward – Nava is ‘cured’ of ulcerative colitis as she had her colon removed and has a permanent ostomy.   She has her life back, her health back and lives well.  She handles her ostomy herself without a peep of complaint.

So how do you live with a chronic condition?

• As Ms. Vieira stated, with openness and honesty.    I used to talk to my girls all the time about how scary it was for Navi and for all of us; about how unfair it seemed that she had disabilities and then had to have a medical condition on top of that.  And when Navi would cry out, there was a lot of acknowledging of, “I know how horrible this is and how scary it is.”  There were no secrets.  Pain shows itself.

Emotional pain has to be expressed.  Tears need to flow.  That’s what frees us up to carry on with a wee bit of a lighter load.

I certainly had my share of venting, ‘why Navi’; however my own pity parties were held under my covers at night.

• When those calm periods of health are there, run with it.  Celebrate, play, have fun, take advantage and go with it.  We’d grow our memories of good times by making sure to play and have fun.  We’d go out and do, and engage.  Every Sunday was fun day.  We’d go places and do great stuff.   From apple-picking to row boating to Renaissance Fairs to ice-skating, we were out engaging in life.

And when Navi didn’t feel up to it, I’d make sure her sisters were doing their fun things.

• Maintain as normal a routine as possible.  Illness brings forth the feeling that life is out of our control; it’s running us over.  And it is and it does.  Therefore some sense of predictability is crucial.  Kids function much better when they have structure and routine.  I say, we all function better with that.  We need to feel we have some ‘say’ in our world.  It’s securing to know some things stay the same, especially when the big stuff goes out of whack- in this case the health of someone.

These are a few things that helped us through our travails of chronic illness.  If you’ve gone through any sort of ongoing condition with a loved one (or yourself), I’d love to hear what helped get you through.

I will not be posting for the next two weeks as I will be away on vacation.