Conditions

Handling Chronic Illness: No One Has All the Answers

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My endo plugged his fingers in his ears when I said, “I don’t think any of my past endos have been listening to me.” He laughed and said, “I am listening to you now.” Indeed he is listening now. It is finally serious. Surgeries. Implications. The stuff that makes doctors STOP and LISTEN.

There is ambiguity. Ambiguity is where many chronically ill people live. And it is where I live right now. And I am OK with this. I feel actually safe here. I can do ambiguous. I live well here. I tolerate ambiguity because the rest of the world does not.

The chronically ill tolerate this space so well because we have been force fed this diet for so long.  We handle it. Are the results in yet? Yes- but they are inconclusive. Are you having surgery or radiation? We still have to do more tests to figure out which is better. Someday the answer will be clear but not yet! This is where we reside  WE KNOW AMBIGUITY. It is not safe- but it is not entirely unsafe either. It is merely liminal space – the fertile doorway – the not here, not there. It is the in-between space. Frustrating, exasperating, annoying, and yes- calm too.

The yes and. The yes but… The not quite. This is our space. We dwell here- the chronically ill. We get the unanswered questions or the space between the answers. We wait with patience while the experts work up answers. And more – we become our own experts and think up our own solutions.  Better – we become partners with the experts and WE BECOME EXPERTS ON OURSELVES. We become the solution finders.

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How many times has one of my specialists looked at me and said, “What have you done in the past when this happened?” What she means is, “I have no f***ing clue, Melissa- I’m lost – I cannot help you because this is NOT SUPPOSED TO BE HAPPENING.” And when she says that to me, I have no answers because in the past THIS NEVER HAPPENED BEFORE! And I tell her so. So we end up in our ambiguous area – in between specialties, even.

What area do I belong in medicine? Is this neuro-endocrine or rheumatological? Is this G/I or nephrology? At first glance, they seem so completely separate and distinct. Yet- as I move through them, they become more mutable – each subspecialty becomes less distinct. Each illness or symptom I have – each THING causes or directly effects something in the other area. It is powerful.

Lo and behold – ambiguity in one area causes so much chaos everywhere else! If balance is restored in one area, the health or disease in the area seems to become more obvious. Rather than mask each other- the onion layers peel away and answers are seen! I’m often amazed at the exact science of it.

Oddly- many cultures are not so surprised by imbalance or holistic health. I felt it happening for years. In fact, a good acupuncturist told me years ago this imbalance was happening in my meridians (or energy centers). Why should I feel so amazed that my doctors are finally finding it?  And why should I be amazed that even as one area is found, more ambiguity is revealed?

We are not a culture that works well with fuzzy lines. We like our equations to be balanced. We like everything to be settled up and totaled. We do not like imperfections or almost there. Or answers that begin with, “that depends.”  And yet- in illness, as in many areas of life – “it depends” or “it is relative” IS OFTEN THE ANSWER.

SOMETIMES there is no good answer. Sometimes, I have to wait. Sometimes I have to chill out.  Sometimes it is going to take another month or two to find out what I want to know. Sometimes even in a month or two I’ll still have to see what happens after that. Sometimes KNOWING is less helpful than the unknown, and there is peace here.

Understand that I am not recommending ignorance or not self-educating. I am merely saying that sometimes when all is said and done – knowing everything does not always help. KNOWING everything is no more or less helpful right now because I can DO NOTHING MORE than wait on more tests anyway.

I sit here in ambiguity, in this unknown space. And I am OK with it. I know this space. Sometimes there is calm here. There is even power here because I KNOW MYSELF. Chronically ill people KNOW OURSELVES – our identity is not formed from the irons of being told DEFINITELY WHO WE ARE OR ARE NOT. It is formed from the day to day of fluidity, ambiguity, of maybe and we’ll see. THIS IS WHO WE ARE. WE ARE AMBIGUOUS CREATURES. And this is our ninja strength. I am in my power now. Yes- a frustrating power- BUT IT IS MINE. I own it.

So – waiting to hear, waiting to see, WAITING a little bit for more answers… I can do that. Because waiting and seeing is something every chronically ill person does well. We get this space. WE CAN DO AMBIGUITY.  It is in our entire life force and we are stealth ninja warriors because of it. Our identity shifts easily because any given day we might hear more news, different news, or wake up feeling differently than the day before. WE GET AMBIGUITY. We are ninja. I am OK with this. I can do this space.

What about you? Are you a ninja stealth changer? Do you wait for answers that change? Does your YOU change from day to day? Does your doctor or your spouse or your family have a real bead on you, or do YOU and your OWN wellbeing define who you are from day to day? Is it amazing how chronic illness has turned a WEAKNESS into a MAJOR STRENGTH? I NEVER knew – never realized ambiguity would be so easy to tolerate – so easy to accept until now- when I realized that THIS is a place of power. What do you think? Are you OK with the unknown? Does it give you strength sometimes to wait for answers as long as you know your OWN inner truths?

Tell me! I want to know!  I’ll see you same place next week! Kisses!