Saturday, August 28, 2010

Deja Vu, The Bad Kind

Jaundice. I have it again. Yellow eyes and intensely yellow urine. These symptoms correlate with the unbelievably bad results of the blood tests that were drawn Thursday. AST is 1512 (normal range is 0-40). ALT (also 0-40) is 812. Total bilirubin (0-1.2) is 7.8.

This bucket of bad news elicited an "Oh, my God!" and a "What the f*#@!," then quickly transitioned into tears. Jaundice is something you get BEFORE your transplant, not almost four years afterward. I'm especially unnerved by this turn of events - of all the challenges, issues and health problems I've juggled since my transplant, this is the first time I'm dealing with a condition I had before it. Does this mean my new liver is toast?

I'm more worried than I've been in ages. Monday I'm having a liver biopsy (my second in 10 weeks). After that we'll learn more and deal with it then.

God, thank you for giving me time to get my son settled into his freshman year of college before having this fall into my lap. Dealing with both at once might have pushed me over the edge. Oh - and God, please help me find some grace and peace of mind. Amen.

Photo by Kenn W. Kiser,

Tuesday, August 3, 2010

I'm Not Exaggerating - I'm Really Sick!

EUREKA! Someone has put into words some of the feelings I've struggled with for the past four years.

In an article titled "Words that Wound, Words that Heal," Lucinda K. Porter, RN describes how frustrating it can be to have people say, "But you look so good!" when talking to someone suffering from a chronic illness. Whether the statement is honest or not, it can spark an unintended, negative reaction from the recipient.

In the Healthwise feature from the August 2010 HCV Advocate Newsletter, Porter described her personal experience on the matter:

These comments are well-intended, but simultaneously invalidating. I recall late in my [Hepatitis C] treatment, someone saying to me, “You don’t look sick.” My hair was thinning, my fingernails ghastly, and I had a nasty, visible rash. I was nauseous, depressed and irritable. It took every ounce of restraint not to say, “And you don’t look stupid or careless.”
My sentiments exactly. I continue to feel unwell even today, nearly four years after my transplant, which many people don't comprehend - and a comment of "... but you don't look sick," to my ears, is synonymous with "Oh, you must be making this up." The biggest factor at play isn't what they say, but how I receive it - I can't believe I'm still having so many health issues, I should be able to "suck it up," I've become a terrible wife and mother.

Porter offers some sage advice on how to communicate with people who are ill. She includes recommendations from Susan Milstrey Wells, author of A Delicate Balance: Living Successfully with Chronic Illness:

If someone says you look great when you’ve admitted feeling awful, Milstrey says, “Looking good while feeling bad takes talent!” and she proposes simply saying thank you. If they express that you look far too good to be feeling sick, then Milstrey suggests, “Yes, it’s even hard for me to understand how I can feel so bad when I look so good.”

The other side of this equation is how we talk to others when they are ill. It would be simple if we could speak to others as we would want them to speak to us, but we are all so different. Let’s start with what not to do:

Don’t judge – Even if you think the person is exaggerating, remain compassionate.

Don’t tell them about a worse experience – You may think it helpful to tell someone who is struggling through HCV treatment about how you scaled Mt. Everest without oxygen during your treatment, but it may make them feel inadequate and hopeless. Keep your experiences to yourself unless you think they will help.

Don’t tell them how to feel – “Get over it, you’ll be fine” is the last thing we want to hear when we are ill.

Don’t over-sympathize – Pity doesn’t help and it is demeaning.

Here’s what you can do instead:

Listen – Sometimes we communicate far more with sincere, attentive listening, than we do with words.

Offer support – You can give on-the-spot support, such as “I don’t want to pry, but if there is something going on and you want to talk about it, I’m happy to listen” or offer help, such as, “Is there anything I can do?” Don’t offer to help if you aren’t prepared to follow through with a “yes” or a firm, “I’m not able to do that, but I can do such-and-such.”

Relate – If you had similar experiences, and your intention is solely to show empathy, then it is fine to relate your experiences, as long as you aren’t trying to show one-upmanship.
Great advice for us all. And I'm going to add one final bit of counsel: Be sincere. I can tell if you aren't and that hurts most of all.

Photo by Jon Wisbey