Sunday, July 20, 2014

Why I have not told you about my health

After a year of thinking that my cough was allergies and not getting much change using anti-allergy meds I decided to have it checked out. My primary care doctor agreed and sent me to get an x-ray. When it was compared to a previous one – it was off to the pulmonologist. In the 1990s I had a condition called B.O.O.P. / along with polymyocitis. So there was some thought that I was having a recurrence of that. But also pulmonary fibrosis runs in my family so that was another thought along with much more dire and imminently more terminal things.

The point of this essay, however, is not my medical history but my reaction to once again having something serious going on and my unwillingness to tell people. At first I did not even tell my husband that I was going to have it checked out. He is a retired doctor so had already been thinking about telling me to get it checked out so was relieved to hear that I was getting a chest x-ray when I told him I was getting it checked.

Once I got the results that said I needed more tests, I still did not want the news to go beyond him but decided that I should tell our adult children so they did not get a big surprise. They hate it when we don’t tell them what is going on with us.  Then I told my priest who is also my colleague – since we work together and she is a great support. I decided that it would be good to talk it over with my spiritual director who helps me sort out what I am feeling and how I am reacting. But beyond that – I still did not want to tell anyone.

As I wondered about my reticence, I reflected on the last time I was really sick and the reactions I encountered. So beyond wanting to stay in denial by not talking and not wanting to cause others to worry there were three reactions that I wanted to avoid.

Pity: that “look” people give you that says “oh you poor pathetic sick person” as if one’s whole identity is being sick and you have lost your essential person-ness. Maybe this is asking too much of others. It could be that others just are expressing the feelings they are having and not really putting me in the “sick person” box. It may be that in our family we tend to do grim humor instead. We use humor to get through scary stuff. We know the seriousness so really don’t need that reinforced or reflected back. As an example, I was telling a friend about trying to fix the church’s sprinkler system and being up to my elbows in water when I saw what could have been a live wire in the water. My friend replied “well that would have solved all your problems.” I laughed and laughed and continue to laugh when I remember her comment.

Avoidance: people begin to draw away. This does not always happen physically, since you do have encounters with one another, but happens a lot emotionally. For me, as an extrovert, it is sort of like being dead before one is really dead. I think it comes from the other's not wanting to think about one's own mortality. When I am around people who are really sick and it could be terminal – I do feel like fleeing. I understand the reaction but it is hard to experience from the person who is sick point of view. When I had my previous serious illness – it revealed who would hang in there with me and who would not. The church, sad to say, failed miserably in this one. Though I was a seminarian in process to get ordained and had been super active in the diocese for years, I received no calls from my bishop or clergy. Only one church friend checked in with me regularly and friends who are not Christian kept up our relationship.

Questions: wanting the gory details and endless questions about what I did to “get sick.” This is probably the hardest thing to deal with because not only do I not want to talk about it all the time but also I do not need to add guilt to the mix. Questions like: “Do you think there was too much stress in your life?” Did you have a healthy diet?” etc. There are causes for some things and illness may be the consequence of something one does (like smoking - which I never took up - dodging that bullet), but mostly things happen because we live in mortal bodies that are subject to all sorts of conditions and will eventually die from something. Hearing questions like these may give me one more layer of anxiety that I really don’t need. I think it also comes from the hope that if one has not engaged in those behaviors or habits – one will not get whatever terrible thing the other has. It is sort of like holding up a cross to keep vampires away.  The questioners are trying to discover if they are vulnerable to the same thing.

All three of these reactions often come from caring but the way they are experienced by the person with an illness is not always helpful. In the end the person feels like an object in someone else’s life drama. I would suggest that you ask what is helpful and try to understand if I react badly to any of the above actions.  I realize this is a bind for my friends – you want to reach out and I don’t want you to withdraw in fear of doing the wrong thing. The best for me is for you to stay a pal and not worry too much about doing it right.

Upon letting this “marinate” for a few days:
As I reflect on the above I think there is an undercurrent of fear and anger in myself that evokes my reaction to your reaction, anger at having to deal with possible outcomes and fear of loss of abilities. I try not to project into the future what will happen and I try to live day by day – making necessary plans but living now. I don’t say “why me” – I know we all deal with our own stuff. I also try not to compare my stuff to yours – which is worse or better. And I like to stay in denial occasionally!

My husband and kids are a great source of support. They know me well enough to let me come to my own decisions. I also appreciate my brother, my priest, my spiritual director and good friends who listen and wait for me to hear myself. My priest and my spiritual director are very good at asking an occasional question that makes me go deeper but not all the time. And often my friends' and family’s grim humor is a catalyst for facing the days and nights of whatever happens. These are clarifying days – that help me live in the moment which all any of us have but sometimes need reminding.


Linda Ryan said...

Having a diagnosis of an illness is bad enough, but sometimes when you tell people they look at you as if you grew not a second head but a third one on your shoulders. You, dear one, have only one head and a very precious one it is.

Thoughts and prayers will continue. Like with the cancer I had, we will go on, praying for each other but getting on with life and work. Hope that is okay with you. :)


Meredith Gould said...

Thanks for the "c:" on Twitter; much to identify with in your post.

Although I'm active in what's known as the "e-patient" community (e= empowered, not electronic), I do not make a habit of going on about my chronic illness. Now 25+ years into living with fibromylagia, I'm starting to talk about it, mostly because my employability is no longer at risk.

Like you, I did not want Being a Sick Person to become a primary identity and still don't.

When and why we do disclose health status and the consequences of doing so during this digital age is the subject of a panel I'm on at the Stanford Medicine X conference this September. Your post inspires and reminds me to write more about this issue.

Ann said...

Thanks Meredith and Linda.

Scoop said...

I understand your reasoning completely.

Why DO people want all the gory details? It's beyond bizarre. Also people expect those fighting off long-term or chronic conditions to look or act a certain way. After I nearly bled to death after the birth of my first child, I was severely anemic and had other issues for several months afterward and was on medical leave. People either didn't believe my condition had ever been that grave or didn't understand why I couldn't come back to work (I finally told a principal that I would come back to work when I could go an entire day without wetting my pants, although my exact terminology may have been more picturesque). And then there's the blame game: asking people with pulmonary problems if they smoked or liver problems if they drank, etc. Nunya bidness.

On thing that comes through about you even though the internet is your incredibly strong heart, mind, and spirit. Know that you are in my prayers.

Jon M. Richardson said...

Ann, I particularly appreciate your comments about the questions that people ask, and sometimes the accusations that they make. I've experienced a similar frustration after having had back surgery a few years ago. Many people - sometimes even doctors - seem unwilling to accept that my condition derives from genetics. I didn't do anything to deserve my fate as a back patient. (And, of course, even if I had, blaming isn't helpful...) People want to blame my weight - sure it wouldn't hurt to lose a few pounds, but there are millions of people more overweight than me whose backs haven't fallen apart! They kept asking if I was lifting things I shouldn't. So many people wanted to find a way to make it my fault. I suppose they just didn't want to admit the frustrating, and sometimes scary reality that sometimes our frail mortality shows through - whether we like it or not, and whether we "caused it" or not. Thanks for your sharing, and be assured of my continued prayer for you and your family.

Elizabeth Kaeton said...

So much truth and wisdom here, Ann. Sharing your story will (no doubt already has) help(ed) many others.

Thank you.

Prayers for you at this time.

Cricket Park, VicarVirtual said...

Prayers and hugs to my Cubbies buddy. Be good to yourself.