What would’ve helped

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No one will ever tell you how to cope with getting a serious illness, not even your doctors.  You think they will know, but they won’t.  It is unrealistic to think they would.  Remember, they went to medical school, not social work school.  But the poor souls are saddled with you and me and whatever illness we bring to the exam table.  When they ask how you are feeling, you may be tempted to answer, “Isolated and wallowing in an identity crisis.”  Resist this urge.  This is not their area of expertise.   For all you know, they’re wallowing too.

They do want to help though.  They want to give you the drug or the surgery or whatever and figure out the problem so that you won’t have to visit so often or maybe never again.  They want to figure it out.  But it isn’t always that easy because sometimes you are both trying to figure out two totally different things.

They will give you medication to try to solve or treat certain problems.  Those drugs will have stickers on the bottles to stop you from “taking with milk” or “don’t operate heavy machinery.”  These are helpful tips.  They are the “how to’s” of drugs.

I wish everything else was that simple.

I wish illness came with warning stickers.  Do’s and don’ts.  The kind of things that go beyond the physical symptom to the day-to-day experience of living with a disease.  I wish I knew what to do when life flips upside down.  In all of my appointments, tests, emails with doctors, exams, bloodwork, I wish I could have had a guide.

Yes, a guide.

A truth teller.

A sage.

Someone who could roll their eyes at you, smack on some gum and put their arm around you while calling you “Hon” on the rough days.  I think my sage would be older than me and a cross between a Flo from the tv show Alice (sassy waitress) and Tyne Daily when she played the insightful, seen it  and been there mom on Judging Amy.   My guide would be part Wise Woman and part Salty Broad.

I longed for someone to tell me how to handle all of this, to make sense of things when everything was out of my control.  A guide could have helped me to know how to ingest everything from less than satisfying doctor’s appointments to the waves of emotion that hit when I was exhausted from, well, everything.  A guide could have helped me to see what friends were helpful and what friends were not—rather than having me run it over and over again in my brain trying to make sense of it.  A guide could have helped me navigate the waters of identity that get so muddied up when suddenly your old life is inaccessible and you have this new, unpleasant and unwanted life.  A guide wouldn’t have been threatened by my tantrums or by my tears.  They would have known It’s all a part of the process hun.

I imagine my guide’s name would have been Pearl  Something practical and real.  Pearl won’t bullshit you.  Pearl will know how it is and won’t be afraid to tell you when to pull your head out of your ass and deal.  Pearl also would know that Sometimes honey, you just need to mourn the life you left.  She would tell me when my brain was spinning in appointments or after—which is usually when it spins—when I am finally wrapping my head around whatever new thing the doctors want to do.  New equals scary.  Even if it is not.  New is uncharted territory.  New requires adjustment.  Pearl would remind my brain when New freaked me out that we have been here before.  New fades and then it is ok.

And even if it isn’ t ok, then it is familiar.

What I know…

If you have never had a serious or chronic illness you think you know what it will be like.  You visualize someone—frail and emaciated with thinning hair—nervously checking their watch to see if they need to take medication.  These are the people you feel bad for.  People whose whole lives have been reduced to repetitive trips to the doctor and a litany of side effects.   And you think to yourself—with some guilt—I’m so glad I don’t have that.  Someone who has a serious illness—you think—must face the fact that their life is broken.

Pyoderma Gangrenosum.  8 glorious syllables that sound like a Harry Potter spell. Say it slowly with me with a flourish of the wand as each syllable pulls through the air.  Pyo….derma….Gang—-ren…..o…sum!  It casts an incantation that causes the target—36 year old me—to break out in painful, blood-filled boils.  Yes.  BOILS.  It’s an auto-immune disease that affects 1 in 100,000 people—it’s rare.  I also have it in my lungs.  Uber-rare. Freakishly rare.  The doctor who called it “exotic” made me like her immediately. I am many things. Exotic is not one of them.

In all of this insanity, as you embrace what it is like to have your body be totally out of your control, you might think it will suck.

And it will.  Oh boy, will it suck.  Like a big o’l Dyson vacuum it will suck.  There will be tears and exhaustion, anger and embarrassment, isolation and fear, surgeries, drugs, awkwardness, and the feeling that things will never go back to the way things were before.  There will be a mourning of the loss of you.

But here is the thing no one tells you.  The secret is that it will not suck all of the time.

You think it will.  But it won’t.

Some of the time it will be incredible.