Understanding the Chronic Illness “Classifieds”

ImageIf you have someone in your life who is suffering from chronic illness, or if you yourself are slogging through this swamp, please read on.

I sit here, resting after taking a shower.  I put my jammies back on because anything with a waist band is squishing my liver and spleen, which are presently unhappy with me.  I sit in the dark, because sensitivity to bright light is part of the package as well.  I spritz on some perfume to feel “together”.  Regular life right now.

Want Ads

All folks dealing with chronic illness long for normalcy.  Some cannot remember what “normal” even felt like…but they witness it in folks around them.  Being able to do something spontaneous, or even planning events on a calendar without any thought is a luxury to them.  In conversations, emails, Facebook statuses you’ll read, “I hurt too much to sleep” (Wanted: restful, healing sleep for my struggling body) or “Feeling a little better today” (Wanted: someone to rejoice with me…I need encouragement) or “I just feel like giving up” (Wanted: someone who can remind me that God is my strength in weakness…my iron needs sharpening).

I love this quote:

“A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.”

Friends like this are pure gold.

Obituaries

My “Want Ad” has, in the past day or so, become: “I don’t want to talk about it anymore” (Wanted: someone who sees me as a person, a mom, a wife, a friend, a sister…not identifying me first by my symptoms).  People mean well, I remind myself. In a way, folks who live continually under the thumb of pain, misdiagnosis, mounting medical bills, and grinding fatigue are in a place of mourning.  That person they once were has seemingly disappeared.  I think of the lyrics from a Disney film:

Who is that girl I see staring straight back at me? Why is my reflection someone I don’t know?

We know that sometimes the best thing to say to someone who is mourning a loss is nothing at all…hugs and prayer go a long way to comfort.

I recently made it to Family Camp for the first time in a long time. My health issues had prohibited the idea of sleeping in a tent, with nowhere to really rest.  My husband was gracious enough to secure a cabin for us this summer.  I spent hours in there…reading a little, resting some (this was prior to my diagnosis with EBV) but mostly having meaningful conversations with others who really needed someone to read their “Want Ads” through the lenses of compassion and empathy.  There is a certain comfort in speaking with someone who immediately understands and does not require explanation or back story.

Lost & Found

I found that when I was “out and about” most people who saw me asked, “How are you feeling?”  Their intentions were good…it was something they knew they could talk about as a point of conversation with someone they had not seen perhaps in years.  For me, it just made me ask, “Is this thing such a part of my life that it has overtaken me? Is this who I am?  If so, I need to do something about this.”

I saw the image at the top of this post just today in my Facebook news feed.  I thought about it a lot.  There is truth there.

For Sale: Finding My Identity in My Disease

I often counsel people regarding forgiveness and reconciliation, that I don’t buy modern psychology techniques which encourage folks to “vent”…that it is somehow therapeutic to rehash bitter events and personal conflicts.  No…every time we speak of them, or think of them, rehearse them in our minds, all we do is drive them further in.  We grind that dirt deep down into the pile of our carpet.  Even so, I’m finding the effect of my listing symptoms and the angst of physically enduring very demanding circumstances to be counterproductive.  Even online “support groups” can actually injure a person instead of help. I’ve gone to several to seek answers to questions, but to commiserate, no.  If a group has nothing but “gloom, despair and agony” postings, with no productive discussion, I leave.

Ever since becoming a pastor’s wife, I’ve tried to be candid about everything, allowing folks into my life as much as I can, so they will know me even if the situation does not allow us to become “close”.  I have posted updates on Facebook (and I’m so grateful for the wonderful friends I have there…my news feed is loaded with much-needed encouragement very often), shared at Bible study, texted friends or emailed family with my progress or lack thereof.  I choose not to anymore.

Public Notices

I tried to keep this information public so folks who wanted to pray would know how to pray.  And there are some who really want to know…I actually had one person at camp who asked me how I was doing, and when I answered that I take “one day at a time” she rebuked me and retorted, “How do I know how to pray for you unless you tell me?”  So, for her, I outlined some details. I’m not suggesting living in denial.

Generally speaking, though, I’ve decided to keep my “Want Ads” to my praying chair.  Already I feel more “peace” and “ease” about the whole thing.  My Great Physician knows my whole life’s chronicle…not just the classifieds.  If folks pray generally for “healing” or “encouragement” for me…He knows what they mean.  I love that the Holy Spirit interprets our prayers.

Thanks, Ben, for the thought. I pray my further thoughts may “lift up the hands which hang down, and the feeble knees.”

How can I pray for you? I really want to know.

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2 thoughts on “Understanding the Chronic Illness “Classifieds”

  1. A few months after I was diagnosed with transverse myelitis, we got our first computer, and that was one of the first things I looked up. I found an online subscriber group, and it helped so much to talk to people who really know what was going on and how all these strange symptoms felt. It helped me know I wasn’t crazy, that it wasn’t “all in my head.” With other people, I didn’t want to sound like a hypochondriac, so I didn’t say as much about it, and once I got past using a walker and cane, they thought everything was back to normal, and it was hard to convey that it still wasn’t, or rather, that I’d never get back to what used to be normal, that normal was redefined now.

    Once one of our former pastors said from the pulpit that if someone asks how you are, and you say, “OK,” and you’re not, then you’re being a hypocrite. He then went on to say, “But there are some people whom you don’t want to ask how they’re doing, because they’ll tell you!” And I thought, Who is actually being the hypocrite? 🙂 We tend to just say “Fine” unless we get the sense that the other person really wants to know.

    Sometimes when people ask us how Jim’s mom is doing, we’ll answer, “Not so well” or “She’s declining,” and they look a little startled. But that’s how it is, and probably how it is going to be until the Lord takes her home. So sometimes we just say, “She’s doing about the same.”

    All of that to say, sometimes it is hard to know how to answer that “How are you?” question. 🙂

  2. Sometimes the term “need to know basis” is used regarding the dispensing of information. I guess the way I look at it is, “I take one day at a time” is an honest answer for those who are just trying to make conversation. When the rare individual pushes the envelope and asks for details (and the person I mentioned in the post is one of the most faithful prayer warriors I’ve ever known), then that constitutes “need to know” for me. 😉

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