Open Letter to Care Givers

Dear Wonderful You,

This chronic illness / cancer / transplant process is so frightening and frustrating – for me and I’m sure for you, too.

Neither of us signed up for this – I didn’t expect to get this sick and you sure didn’t expect it either.  Yet you stepped up and are a critical part of my survival team. Thank you is not enough!

Sometimes I don’t know how you do it.  I get so tired and can’t do what I used to do;  or even what I thought I would be able to do just yesterday.  I want you to know about some of the feelings and thoughts that run through my mind that I probably don’t share very well.

As a care giver, I need you to:

  1. Hold me accountable for what I say and do.  Just because I’m sick doesn’t mean I have the right to be mean to you.  Let me know when I hurt your feelings. At the same time, please give me a bit of grace when I’m worn out and exhausted and the right words don’t come out.  I do love you and appreciate all that you do for me.
  2. Remember that the anger or frustration I vent your way isn’t about you.  I am angry that I can’t do what I used to do or what I want to do;  I question my value and my purpose.  Most of all, I do not like being a burden to you or anyone else.  You say that I’m not a burden, that you love me and we’re in this together.   Yeah, right.  I think of the things we could be doing if I were back to normal and it frustrates the heck out of me.
  3. Remember that I’m scared.  I’ve always felt somewhat in control of my life, my actions, my future.  Now this illness has stepped into my life (and yes, our, lives) and makes decisions for me that I cannot ignore. I may also be one of those people who avoids thinking and talking about the inevitable end of life.
  4. Be my advocate – even with myself.   Tell me to lay down for awhile if I seem tired or fading.   Yes, I’m a grown-up, but I need permission to rest, as I feel like a slacker most of the time.  You are not responsible for me – I know that – but I feel less guilty when you say it’s okay.
  5. Be my advocate – with the doctors.  I know I get weird symptoms and tend to forget a lot of things.  When I focus on one symptom or pain, I forget to mention others – and the docs need to see the whole patient.   Sometimes we see so many specialists whose focus is so narrow that the overall person gets lost.
  6. Take time for yourself. (THIS SHOULD REALLY BE #1) Please go out with a friend and don’t worry about leaving me at home alone.  I will rest or putz around just fine.  And I will feel better knowing that you are able to recharge your social self.
  7. Keep finding humor – even dark humor – through this journey.  Laughter is healthy for all of us.  We’ve gotta keep laughing – some days it’s the only exercise I get!

I am filled with gratitude for your continued support.  I also have ugly emotions like guilt and anger that you are even in this situation.  It’s as if life’s regular challenges weren’t enough – toss in some unexpected, uncontrollable health problem to our lives and see what happens!

These ugly emotions I must work through on my own – no platitudes will make them go away;  this is part of the process of coming to terms with a stark reality that humans aren’t too good at acknowledging:  we really cannot control everything.   But we can control how we react to what comes are way.

I want you to know that no matter how this ends – whether by cure or slow demise – I have great love and appreciation for you.  You are among the angels on earth, making life here better for others.

XOXO

Your Favorite Patient

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