Caregiver Stress and Chronic Pain, chronic pain

Caregivers for those with an Invisible Illness

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“When someone’s fear touches someone’s pain, it becomes pity.  When your love touches someone’s pain, it becomes compassion.”

Stephen Levine

When someone you love is in pain it is so very difficult to know what to do to help them.  I personally know how the people who love me help me in my journey with chronic pain but I cannot always be certain on how to help a loved one of mine deal with their own pain or struggle if I have not faced them myself.  Nobody ever wants pity.  Ever.  I do not talk about chronic pain although it is always there: coping mechanism that has done wonders for me as I have trained my brain to not think about pain.  However, now that I am writing about my twenty year life with chronic pain word has gotten out: “Jessica Martin has had chronic pain all these years.”  Someone really should have told me about this whole internet thing: talk about word spreading fast!  I’m kidding, I want to reach as many people as I can in order to help as many people with chronic pain as I can.  But, I (and many of you can attest to this) truly get such negative energy when a person says to me: “Oh My God.  I am so sorry. I feel so bad for you.  Tell me about your pain.  That is just so terrible.”   Their heart is in the right place but I do not want anyone to feel sorry for me or look at me differently because I have an invisible illness.   Did ya think I was partying my ass off and crying all those nights for fun?  Yes, I have had chronic pain for over twenty years: ten of them have been pretty awesome though. So what should a loved one of a person with chronic pain say or do to help him or her?

  1. “I have no idea what you must be going through, but I love you and I will do my best to understand and be there for you.”
  2.  “I believe you.”
  3. “You are such a strong person.  I know you can get through this and I will stand by you why you muddle through this.”
  4. “If there is anything I can do, please tell me.  Even if you just want a shoulder to cry on.”
  5. “I am so proud to know you and be a part of your life.”
Those are five things I would have loved to have heard and my dad was the greatest caregiver one could ever meet.  He never once doubted me and was at every doctor’s appointment with me and never gave up on me.  He never showed pity, fear, or gave up.  He showed me love, compassion, and empowered me to make my hardest step in my journey with chronic pain: acceptance and learning how to manage it naturally.  He never pushed anything and if/when he did he backed off.  He forgave me for my mistakes when I was in my darkest hours of chronic pain he had such empathy as if he had chronic pain himself.  He never lost hope and I would not be here today without him.
I have family members right now who are going through a hell I have never faced.  I will be very honest, I do not know how to help certain people.  I want to very badly but sometimes there really is only one thing a person can do to help another who is in pain: Love them and show compassion.  I hate to get all John Lennon Sixties on everyone but honestly sometimes, all you need is love.  Some things cannot be fixed, for me that is chronic pain.  I am on the other side of my disease now and managing it very well but I still need love and words of encouragement such as: “I know you do not talk about your pain, but I am so proud of you.”  We all need love and encourage from our loved ones at times.  Sometimes I want to wear a shirt that says: “I have chronic pain, I am in a great place but I would love some positive reinforcement because some days or moments are quite difficult.  PS: I do not want to talk about pain.”
If you remember nothing from this post remember that nobody wants pity for any pain they are enduring: it makes that pain worse.  They only want love and a sense of empathy.  We all do.
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