Invisible Chronic Illness Awareness Week

I've gone back and forth about whether to join the blogging efforts this week; I never want to feel like I'm creating an image of our lives that is horrible or miserable.  We live with so much joy thanks to walking this road with Jesus and I never want to my readers to lose sight of that.

That being said, as soon as I saw the Invisible Illness Awareness Week was this week it made sense to create a few posts that might pertain to it.  I think it's always a good idea to be reminded of the people around us who may be suffering silently simply because their illness is invisible.

In many ways NF1 is invisible.  Len hides his pain well and does everything he can to avoid drawing attention.  He doesn't have the physical deformity that some with NF1 have; he hasn't had to deal with some of the more extreme possibilities that come with NF1: no tumours that damaged bone integrity and led to amputation or spinal reconstruction, no leukemia, epilepsy, or malignant peripheral sheath tumours.

And yet there is pain and the burden of bearing a chronic, unpredictable condition.  I don't think either of us would pretend that the current mildness of Len's NF is equal to those who are home bound due to chronic illness, whether chronic fatigue syndrome, fibromyalgia, crippling mental illness, lupus, Crohns, ulcerative colitis or many many other diseases.  Len lives a fairly active, able life; he's able to leave our home to visit friends and family, to go shopping and go to school and church.

As the caregiver to that man, however, I would be lying if I pretended that the pain or his NF1 was peripheral to our lives.  We have made so many adjustments to keep our life looking as normal as possible. In a lot of ways we do that to maintain stability, but we also do so to keep NF1 from intruding on everyone else's lives as well.  Len hates to draw attention to his NF1, and yet there are times we can't help but.  We understand the helplessness that people around us feel and we do our best to limit that, but it can't always be helped. 

Those adjustments present themselves in different ways... it means limiting social time so as not to completely sap Len's energy; it means allowing ample time for resting; it means if an evening visit goes too late, there's a good chance Len will doze off (please don't take that personally).  Often it means planning ahead: packing pain meds, sweaters, slings and other items.  I check rooms for drafts and ask people to move so Len doesn't need to sit in under a blast of cold air because the choice is facing my man in pain or having someone look at me at me funny or roll their eyes.  It even comes down to altering a wardrobe to ward off chill because his circulation system can't do it for him.  And there's more... but I don't need to list everything here to paint a general picture.

These adjustments are not peripheral.  They are the nitty gritty of daily life.  And to most people they are completely invisible.

I'm not joining the blogging efforts this week to elicit sympathy or make you all feel bad for us.  We always covet prayers but most days we feel extremely blessed to be living the life we're living.

A week designed to generate awareness is more to open eyes to the reality that invisible illness is all around us.  While NF1 is the illness we cope with, I can think of so many more who suffer in silence, especially those who fight mental illness, depression and anxiety alone because of social stigma and shame.

Can you do us a favour this week?  Can you keep your eyes and hearts open for those who might be valiantly attempting to display the normalcy of life despite incredible pain or illness?  Can you hold in your prayers (whether specifically or generally) those who struggle with illnesses that appear invisible to those of us not looking, and those who suffer in silence because of social stigma, fear, or shame?  And maybe, after this week is over and we all return to whatever normal means for us, perhaps each time I blog about NF1 you can say another prayer for those same people?  That would mean a lot to us.

I will extol the LORD at all times;

his praise will always be on my lips.

My soul will boast in the LORD;

let the afflicted hear and rejoice.

Glorify the LORD with me;

let us exalt his name together.

I sought the LORD, and he answered me;

he delivered me from all my fears.

Those who look to him are radiant;

their faces are never covered with shame.

~ Psalm 34: 1-5 ~