Set Up for a Health Disaster, part 4 of 9

~finding yourself in the midst of a chronic illness~
(aka, "what it seems no one really knows....")

Having already addressed, a bit, in the preceding posts the issues in part of HOW I got to where I am, and my frustrations with insurance and doctors and prescriptions, THIS post will be more reflective and, I hope thoughtful as well as perhaps encouraging to anyone who finds himself in the midst of a chronic illness.

Answering the hard questions: "How are you?"
When you have a chronic illness, you have to get used to NOT answering this question honestly when it is routinely asked. That may sound pedantic, and I don't mean it to be. Rather, if you are like me (and maybe I'm unique in this?), I really cannot abide "inauthenticity."

I think "flirting" is CHEAP, I think "dating" is merely creating an ARTIFICIAL test environment where no real intimacy or knowing-of-the-other-person can take place, and...I think answering the "How are you?" question can be darn-near torturous.

I have VERY seldom been one who finds herself able to muster up an enthusiastic "Fine!" Even before this past couple of years and the health struggles therein, I have felt to answer "Fine!" was artificial, and merely colloquial - and yet another way that we, in our society, isolate ourselves from having genuine, intimate connections with each other!

A stranger on the street calls this out as a greeting? I am quite "fine" with answering with some expected, cryptic pleasantry. But at church? at work? (at school, perhaps?) a family member? Part of me "expects" them to CARE - I mean really CARE to know how I am doing in answer to their question! So, I try to answer in an honest, but short way that doesn't also have the risk of discouraging or upsetting them....

That is to say, I don't think I should probably always answer with things like "Well, actually, I've been really struggling with [fill in the blank], and this is really tripping up my ability to get any genuine rest. So, if you could pray for me, I would REALLY appreciate it - especially about my attitude, cuz seriously?, when I am not well-rested I struggle to not bite people's heads off, or my own for that matter, and that is not only unloving, but could really do some damage...."

Yet that, or some close cousin, is almost ALWAYS the thought flying through my head before I answer a person on this point. And invariably, I will end up offering a very long, socially unacceptable pause before I finally say "I am well," or "I can't complain," or more recently "I am doing better than I deserve."

I don't know why this is; and I am examining myself on this very point - in part because I think there is an intrisic selfishness to the fact I find this such a gruesome exchange. And it IS - after all - a DAILY experience, so I must find a solution to this dilemma. It doesn't matter where I go, anyone and everywhere asks this question! And......what if I make it a point to ask the question first? Hm, I wonder if that would be a way of pre-ordering my thoughts so that I can approach the "colloquial pleasantry" in a way that would be more selfless and mindful of the other person? ....Train myself to be less inside my own head, and more prepared and intentional about thinking of others first?

No doubt I will need to revisit this topic in a future post.....

The Isolation Factor
This seems to be particularly magnified if, like me, you happen to be single and live alone. And I will, perhaps, address this in more detail in an upcoming post concerning HOW the Lord gives grace to the humble(d); for now, suffice it to say, even if you an introverted, non-relational thinker by nature, the more ill you are, the more alone you feel.

For the purposes of this conversation, at this stage, let's just assert that I deal regularly with a good deal of fatigue. My particular situation also involves my adrenal glands kicking in to provide "energy" - normally [designed to be] a fight/or flight response to stimulus, and I will experience an "adrenaline rush" as part of the normal course of any given conversation, or reading a book of particular interest! And I don't have to be "doing" anything. Which means, I have come to realize, that I MUST guard my rest - time that I have more direct control over when my adrenal glands are engaging in response to situations. Which means I am often having to stay home, and not even move about my apartment or I will induce both an adrenalin rush and its subsequent crash.

This has a two-fold effect, the first of which is obvious, the second of which I didn't anticipate. 1) By virtue of actually BEING home more often, I'm more isolated from relationships, and 2) By virtue of being home during those times when I am MOST sick, people don't SEE me very often when I'm very ill. So there is this very strange feeling of "they don't believe I'm really sick" that rather dominates my thinking.

Perhaps, again, I should refer back to post #2 of 9 in which I touched on the reality of my "dependence" upon the good opinions of others, and the fact that my being home sick and having to refrain from making commitments to things like my church choir, or even regularly attending on Sundays! makes me feel like people are suspicious of just how sick I have been....and I want them to believe me! Because I cannot abide falsity or artificial pleas for attention or compassion/care/concern, and I do not want to be perceived as someone who is just crying out in this way....like some kind of Munchausen patient.

So, I speak to my soul and suggest "Perhaps, Leah, this is getting too close to the idol of your heart? Perhaps, Leah, you are realizing your fear - that you cannot control every person's good opinion of you, and just the threat of that is enough to force you to overcompensate and try to convince them! So when they ask you how you are....you want to tell them all the glowing details, and you can't just say 'I'm doing well!' or, better, 'I am thankful for the Lord's many good blessings!'....Perhaps, you need to allow others' opinions to be what they are, and not allow them to define you to yourself. The good opinions of others need NOT dictate how you think about yourself - rather speak the truth to yourself: Your identity is in Christ, and you are a NEW creation, and the old things have passed away and behold, all things have been made new. And 'My grace is sufficient for you; My power is made perfect in weakness.'"

so help me, God....

Cultivating Patience ~ How can they know if you don't tell them?
I experienced a profound gut-punch at a recent Ladies' Retreat - I felt noticeably "not normal" as I was struggling to keep my adrenalin from kicking in, and yet still be sociable. It was the turning point, actually, for my decision to try going Gluten-Free.

That Friday night, I was visibly physically distressed - I know, because everyone that talked to me asked me how I was doing and suggested they thought I looked exhausted. In "normal" small-talk fashion, they DID show the very care of which I was lamenting the lack above, and were probing into my condition. Since I was already "on the edge" physically, even engaging in conversation would have put me over the top, and it was all I could do to concentrate on staying calm so my adrenals wouldn't go into overdrive mode.

I recall one gal in particular had invited me to join her table for games, enthusing that if I just sat down and got into all the fun I'd feel better. I felt a surge of anger as my first reaction, irrationally mentally crying out "NO! You don't understand! That will only make things much much worse!" Mercifully, I came back to reality before I actually opened my mouth and was able to decline the invitation and suggest I would really feel better if I could just get to bed. As it is, I was up every hour that night, and even more exhausted come Saturday morning.

By this time, I was making mental note of how very not like the other ladies' I was at least appearing to feel. Even women whom I know to suffer from their own chronic fatigue and/or pain, etc. seemed to be chipper and bright as day. Perhaps they have just learned to mask it more effectively than I have. But privately, in my room, when I was dressing and trying to get ready for the day, I was bordering on despair with tears in my eyes, telling myself "I can't live like this! This is not normal, and this is not how my body was designed to function!"

Rather than diving into depression, I decided I had to at least give this new diet a try. All my symptoms have been consistent with some combination of PCOS, hypothyroidism, adrenal fatigue, and the newest addition to the list - Celiac disease. I had learned that it is being discovered that PCOS patients very often also have Celiac disease - I am not sure of the connection, and know that BOTH conditions have been found to be genetic, and as a result of some savvy internet searching undergirded with information from this health and wellness class I've been attending for several months, I have concluded I need to try a gluten-free diet. And as I write this, I do not know to what extent (if any) I have some or all of the above conditions. (The only one I have had diagnosed by a physician so far is the PCOS.) But I also know I can control what I do and do not eat FAR more readily and far more willingly than I can subject myself to numerous, expensive diagnostics leading to many more prescription medications which I will not realistically be able to afford, and by which I cannot realistically expect to receive true deliverance!

Some Lessons learned?
*clearly, at the root of much of my above mentioned struggles is a heart that is still very steeped in pride, a longing to thought well of, even loved. it is a deeply entrenched desire, the trappings of which I recognize in even some of my earliest childhood memories. I don't remember a time when I wasn't afraid of what other people were thinking of me.

*and as I write this, I am reminding myself that a lifetime of bowing down to my own Dagon in this respect will not be uprooted so instantaneously. (cf 1 Sam. 5, the idol of Dagon toppled again and again by the ark of the covenant, representing the very presence of the One True Living God.) I can only hope the Lord will continue to be patient with me and topple my heart idols again and again, even as I may rush to set them back up each time....

*how utterly unreasonable is it of me to so regularly expect everyone else around me to read my mind! and yet that is precisely what I seem to do, more often than not. When I am most needing someone to draw me out of myself, I allow myself to feel sorrowful because no one really wants to know "how I am." When those same people who really want to know how I'm doing are persistent in finding out, internally I allow myself to get upset because I think they should know that I just need to be left alone! and this says nothing at all about my own inclinations to ask people how they are, or to try to probe past their [in my perception] carefully constructed walls to the "real" them underneath - and perhaps they just need to be left alone? but I want to probe and pry and fix whatever needs fixin'.....I think I am ridiculous and hypocritical! This must change.

*why do I expect that everyone else should have some kind of empathy for my struggles? Do I really know with what very difficult or painful or harrowing things they are struggling? and if they choose not to share, why must I assume this is their efforts to be "fake"? why not rather assume the "best" and that they are trying to be more selfless and consider me above themselves by their very withholding of their sorrows? and why not rather learn from this, as an example of maturity, not always having to wear my every deep and inner emotion on my sleeve for all the world to see? why not rather "treasure up all these things and ponder them in my heart"? (says Leah as she types on her BLOG for all the world to see....)

*Oh, my Lord, please cultivate in me a heart of selflessness, let me be willing to receive not only blessings from your hand but also hardships so that I may be disciplined and trained by them - Please do not yield me up to my idols - however much I might prefer them to you! Let me not be overcome by my yearning for ANY good opinion but yours, and when I long for yours, remind me of who I am in Christ so that I will not despair of the very many, deep, and abiding ways in which I fall short of your standard of perfection. Make his righteousness mine, that I might be conformed more to the likeness of your Beloved, in my heart, mind, soul and strength.

~amen~