Sunday, September 16, 2012

So Much for That

Despite that I said this week would be focused on blogging for chronic illness, clearly I didn't post much about it.

It was a super busy, very difficult week... but also I'm not kidding when I say I just didn't know what else to say. I really wanted to get involved in this, but anything I came up with was just dull or something I basically read somewhere else already.

I guess it feels like you get to a point where it's like, what else can really be said? Those who really read my blog already generally know, and I don't want to be one of those who stays on repeat excessively.

So instead here are a couple of really helpful, insightful posts that I enjoyed and wanted to share with you, along with some brief excerpts:

8 Ways to Annoy a Friend with a Chronic Illness
Partial excerpt:

8.) Ask her how she is and then try to one-up her story.
"Oh, you don't know pain until you have had run a marathon." "You think you're tired? Try being a single mom, while working." "Oh, that is nothing! You won't believe what happened when my neighbor's brother's son had surgery!"
      Watch your words. When you go to another country the culture and language is different. Words that you say at home may be considered impolite or even obscene. People have had different experiences and so they interpret your words differently. So it is in the world of the the ill.
     When you tell a workout buddy, "Hey, don't give in. No pain, no gain, right?" they interpret it much differently than one who lives with a chronic illness.
     Talk to your friend. Say, "I have realized there are times when I have said the wrong thing. Can you tell me some things that encourage you -- and what irritates you? I don't want to be one of those friends you would rather avoid."
     It sounds corny, I know. A bit like an assignment a counselor would give you. But we all want to be acknowledged, validated, and understood. If you ask this, your friend may still fall over, but it will be out of her surprise, not because you insisted she leave her cane in the car.

Fibromyalgia's Invisible Face
Partial excerpt: 

When you look at me, you don’t see anything wrong.  It’s not like I have a broken arm or something visible like that.  I’m usually in a good mood too.  My rheumatologist has told me that research has shown that fibromyalgia sufferers have a degree of pain reduction and fewer flare ups when they are able to keep in a mostly happy, optomistic frame of mind.  I really work hard to keep this outlook now as I’ve noticed it does help over the long haul.  It is not an easy thing to do and there are many days that I fake my cheerful mood until I actually am cheerful.  So not only do the people I pass every day at work or in town not see anything wrong with me, when you talk to me I don’t sound sick.  I’m not coughing up a lung or losing my voice.  I look and sound healthy.
     I wish I was an artist and could draw the face that everyone sees and then draw the face of pain behind it.  That ugly face with scars from battling chronic pain for years.  The battle-worn and weary face of a career soldier battling fibromyalgia all day, every day.  Those two faces would look so different as to startle the viewer, I think. But no one can see our pain-weary faces.  They only see our healthy looking bodies, not the pain and emotional upheaval inside.  Most of us hide the emotions we feel in response to living with chronic pain.  It’s either hard for us to show that to people, or they don’t understand it anyway so what’s the point?  We fight our pain every day, but it is all but invisible to those around us.  Those closest to us see our efforts but they cannot see our pain.  They empathize as best they can but that pain we experience day in and day out is not visible on our bodies.  It’s not a wound they can see and try to help us heal.
      The face of fibromyalgia is an invisible face.  No one can see it or feel it but us.  I think the world would have a better appreciation of what we go through, the daily battle we wage, if they could see the true face of fibromyalgia.

It Is Hard to Explain Illness to Friends
Partial excerpt:

Part of the challenge of living with an invisible illness is explaining it. I mean, if we lived isolated and it was you and your illness on a deserted island, would it really matter if it was visible or invisible? Not really.
     It’s trying to find our place in a culture that values health and who pretty much believes, if you are ill, you must have done something to cause it. We find ourselves defending it, trying to show the legitimacy of it. We can get caught up in explaining illness and all that it entails rather than just focusing on being the healthiest ill person we can be. . . .
     Since they don’t have the daily pain, they can easily forget. It just slips their mind. We all have a lot on our mind, so can we really blame them?
     But the key here? We keep trying. We offer suggestions. We allow others to make mistakes. We give grace when we are angry. We learn to take care of ourselves, by stepping back from certain relationships, and we learn when to take what someone can offer and lower our expectations.

Talking to Someone with a Chronic Illness
Partial excerpt:

I'm bringing dinner Thursday. Can you eat lasagna or chicken?
     People who are chronically ill rarely have anyone bring them a meal or take their kids for a play date. Since moms and dads with illness do their best to keep up with life, they are seen out and about and they "look just fine." But you may never know how much they suffer silently in their home.
     A meal for the family or babysitting the kids so parents can have a date night is a great way to provide support.

And now we go to regularly scheduled programming. . . .

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