I Understand You Don’t Understand

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I’ve pretty much given up on people understanding chronic pain and fatigue and exactly what a chronic illness is.  I’ve come to understand most people just can’t fathom what my life is really like.  I have learned to accept that.

When I got sick, I became severely neurologically compromised from Lyme and FM.  I could not get out of bed due to extreme fatigue.  I couldn’t think clearly, I couldn’t find the words I wanted to say.  I was extremely sensitive to any kind of input of sound.  It overwhelmed me.  It made me feel like my brain was going to explode.  My reaction to prolonged talking, a noise or any kind of input was to sometimes start screaming.  I couldn’t  help it.  It was how I reacted.  My brain was on some kind of overdrive.  I had no control over what it did.

I also cried a lot.  I would be in the middle of a conversation and cry.  I cried from deep, deep grief of losing every single facet of my life.

The pain was unbearable.  It was down my entire left side.  From the top of my head to bottom of my feet.  It started in my head, then into my neck, mouth, and teeth.

Down my left arm and into my fingers.  It hurt to touch anything.  The pain continued down the side of my body, into my hips, butt, thigh, calf and foot.  It left no part of my left side untouched.  It was so bad that on some days I could barely walk because of the pain on the bottom of my foot.

I literally was too fatigued to get out of bed.

The only thing left of me, Kerry, was this horrid chronic disease.

I used to want people to understand what was wrong with me.  It used to hurt that people looked askance when I would mention the illnesses I have.  They seemed to get very uncomfortable.

I have come to learn that in this society, you can get sick and get well and people understand.  Get sick and die, they totally understand.  But get sick and stay sick?  Un huh.  No way.  Chronic illness is just not understood.  Therefore, I believe it causes people to become fearful.  What people don’t understand, they fear is the conclusion I have reached.

When I first became ill, I assumed everyone would want to help me, be comforting and caring.

Not so much.

Just about all friends and family just left my life.  They walked out.  While walking out, they did manage to stop and say screw you.

I was shocked.  Some of these so-called friends I had known for over 20 years.  I had been there for them over the years.  The family members walking out was unbelievable.  Not even my mother understood or seemed to care.

When I had to quit work, my co-workers did not understand at all.  I had been excellent at what I did.  Yet, my work had deteriorated due to the neurological impairments caused by FM-CFS and Lyme.  I could barely show up to work due to fatigue, let alone do any work.

None of my co-workers seemed to comprehend how very sick I was.  No one wanted to hear about what little I knew of the illness at that time; that there was something wrong with my brain and I was severely fatigued.

But my family.  Wow.  I mean, your family is supposed to be there, understanding, right?  Nope, not mine.  My father developed an illness very similar to Alzheimer’s when I was 24..  I totally showed up and supported my mother during that time.  Almost every weekend for many years, there I was, at home, 60 miles away, helping out.  When my grandmother needed surgeries during this time, there I was at my mother’s side.  My aunt, who never showed up to help with her mother, used to sing my praises about what a rock I was for my mother

Where was mother when I got sick?  Doubting, contemptuous not there.

What about the aunt that thought I had been so great?  Who, herself, had asked things from me.  She never wrote, never phoned.  Gone.  The uncle just yelled at me.

I’ll interject here that thank God, for my husband.  I had handled most of the details of our marriage.  Finances, planning, cooking and so on.  He really came to the plate and was supportive.  It took a awhile for him to come out of shock.  It took him some time to understand, but ultimately he did.  He’s been like a rock.  In this, I am so blessed.

As the years went by, I repeatedly ran into doctors who couldn’t or wouldn’t understand.

Even the couple of friends that stayed around were uncomfortable around me and pulled back.

Where was the love that I thought was there?  I had loved and cared for my family and friends.  Why didn’t they have any compassion for me and all I had lost?  Why didn’t they understand?

I thought about this for years.  What was going on with these people?  Had I made disastrous choices in friends?  Were family member cruel?  How could I, Kerry, have chosen hard, cold, uncaring people for friends?  I’m not like that, how could my friends be like that?

Most people are uncomfortable around those whose neurological functioning is not normal.  It puts them off because they don’t understand.  Additionally, I didn’t look as fatigued as I was.  People don’t seem to understand an illness without a solution.  People who are not in chronic pain or don’t have a chronic illness, seem to have no understanding of how debilitating it is.

When I became ill, little was known of FM-CFS.  Doctors had barely heard of it.  None of my family or friends had ever heard of it.  Initially there were a lot of articles, especially within the medical community, saying that these diseases were all in the head of the sick person.  So there was no information for friends and family to refer to.  They became suspicious of me.

The doctors diagnosed me with organic brain disease, which I didn’t have.  I would tell them that I could figure out how to install a DVD and do logic puzzles on the computer.  A person with organic brain disease cannot do these things.  They shrugged me off and believed I had what my father had.  Doctors were desperate to put me in a box that they understood and were comfortable with.

I now know that because I don’t look as sick as I am, people have a hard time comprehending how sick I am.  I finally came to understand I frightened people.

I frightened everyone.  Me, loving, caring Kerry.

I got angry.  I copped an attitude towards everybody.  I was enraged down to the very core of my being.  I’m sick, where is your head and your heart?

I had done medical research and figured out what was wrong with me.  Why didn’t anyone listen?  I did medical research at work, people believed me there.  All the doctors or friends and family had to do was look up CFS-FM.  I was a text-book case.

Years went passing by.  I never was present at Christmas or Thanksgiving.  Did anyone call and say, they were sorry I wasn’t there or wish me Merry Christmas?  No, frightened, not understanding.

I became hateful, negative, filled with resentment and depressed.  Here I was trying to cope with a deep grief, and now I was filled with all these negative emotions directed at everyone.

I passed on hating God.  I decided to put the God thing on the back burner and just say, “OK, I know you’re there, but I don’t understand.”

I was miserable, physically, spiritually and emotionally.

Frightened.  I started pondering this.  Why were they frightened?  They didn’t understand.  They didn’t  know what to do, so they did nothing.  A poor choice, in my opinion.  But a choice that a lot of people make in this situation.

I slowly came to understand that I had not picked out the world’s worst friends.  I did not have the cruelest family in the world.  I realized these people were human beings, with flaws.  They just didn’t know what to do and were frightened of me, of what these illnesses had turned me into.  They no longer knew who I was.

The Kerry who had been was a high achiever.  I did very well at what I attempted.  In an emergency, I was always the one with the cool head.  I always knew what to do.  I could tell people how to respond.  I always did the planning for group gatherings.  I was doing textile art and selling it.  I had recently been invited to join a group of women who had a textile art group by invitation only.  I was in shows and street fairs.  I had formed a business and gotten a license.  I was achieving, living, moving forward with bright prospects.  Dreams were coming true.  Goals were being accomplished.  I was happy.

When I saw this, I saw that I had done a disservice to my friends.

I never gave friends the opportunity to try their skills.  We all knew I could do it better, so why let someone else try?  Wow, what a revelation.

I believe what was going on with my friends and family was that they not only didn’t understand, but they literally had no idea how to go about giving a hand to the woman who could do it all.

They were frightened and didn’t understand.  Those were the facts.  But they weren’t bad people.

I eventually forgave them.  Forgiving is powerful.  It relieved me of resentment, hate and negativity.  Losing those emotions gave way to relief.  The poisons they were causing in my body were gone.

I didn’t call them and say, “You’re forgiven.”  I forgave them in my heart.  They are not back in my life.  They still don’t understand.  But the times we had together are special again.

I understand they can’t understand.

  25 comments for “I Understand You Don’t Understand

  1. July 20, 2014 at 5:04 am

    Hard to press “like” on this one…wish there was a “completely understand” button! I’m afraid your conclusion about when people are afraid, they do nothing, is very true. Sad, but true.

    I hope you are on a healing journey and that you have been relieved of your pain. Blessitude ❤

    Like

    • July 20, 2014 at 5:15 am

      Thank you Lorrie, for your comment. Yes, I’m healing. Three steps forward and two backward. The pain is resolved. That is the best.

      Like

      • July 21, 2014 at 7:24 pm

        I will continue to send you good healing energy!! 🙂

        Like

      • July 22, 2014 at 5:07 am

        Thank you very much. I love having people send me healing energy, or any kind of energy that is good!

        Like

      • July 22, 2014 at 5:07 am

        🙂

        Like

  2. February 11, 2014 at 7:31 pm

    Our stories, although different, are mostly alike. I understand everything you just said here. It sucks and I’ve been to the darkest of dark places, but through it all, I’m still here and I just have to worry about myself and that’s what I’ve finally started to do. I’m in a pretty good place right now. When you get sick, everyone just seems to forget you even exist. I, also, have a wonderful husband who is most definitely my rock. He takes such good care of me, and though he may not always understand, he always stays by my side and holds my hand. He’s the one I know I can always count on, along with my mom. I wish you the best on this difficult journey, but do know there are a ton of us out here that DO understand. We’re the one’s going through, it too.
    Peace and hugs,
    Wild Thang aka Tammy:)

    Like

    • February 11, 2014 at 8:51 pm

      Hi Tammy, thanks for stopping by and for your support. I’m blessed to have a supportive husband also.

      Like

  3. January 22, 2014 at 4:16 am

    Thanks for following my blog, Kerry. Like you I’ve had fibromyalgia for over fifteen years. I’ve learned to live with it but no-one can understand continual health challenges, they all think you’re going to recover. I wish you the best, take care. Like you,too, my art keeps me sane and focused. I live each day as it comes and I’m coming to the idea of not counting time the way we do usually, simply to use each day as an opportunity as and when I’m able. And I rest when my body calls me to do so. I’m learning to go with the rhythm of my body rather than the fixed time of society.

    Like

    • January 22, 2014 at 2:44 pm

      I’m delighted to meet you. I signed up to follow a lot of blogs yesterday. I assumed you were one of those. I went to your sight, it indicated I wasn’t following you. So I did. How odd. But, it must be meant to be. I was just told that I should cut dairy out of my food. FM is inflammatory to the body, dairy makes that worse. I know that is probably true. So I’m going to go about it very slowly but surely. Love all the purple on your blog.

      Like

  4. December 24, 2013 at 11:50 pm

    I should be asleep. Twenty year journey in chronic pain land filled with Should road signs written and shouted by others. Not in pain. I’ve been on Pinterest as a way to distract myself and taste the world. I never thought to look for this community. For someone like you. My husband also has stayed with me. And I have “stayed” for my children.
    It is late but I’m looking forward to exploring more tomorrow. Thank you.

    Like

    • December 25, 2013 at 9:36 am

      Thank you for stopping by my blog. The pain journey is not a fun one. Try not to listen to the should. We are in too much pain for them. Kerry

      Like

    • January 22, 2014 at 3:00 pm

      Hi, I just saw this. I see it was posted Christmas Eve. Somehow, brain foggy me missed it. Thank you for stopping by my blog. There are tons of bloggers with FM who write blogs. Thanks for stopping by, and sorry I missed this.

      Like

  5. dawnhosking
    November 26, 2013 at 4:27 am

    The art of forgiving is empowering, I could relate to a lot of what you experienced ((hugs))

    Like

  6. November 21, 2013 at 10:09 am

    Dear Kerry, I absolutely understand you, like being in your skin! Yes, nobody understand and leave, disapeared. The doctors wants to know what is comfortable and safe for them! You are blessed! I had no-one to support me: no husband, children, etc. sometimes, rarely. But you know the best – being this kind of sufferer we have to be supported each moment, especially need psychological support, carring, being with…Who wants to give it to you? Who is brave enough to carry this enormous responsibility?
    This loneliness was blessed for me! I started to stand on me, search my power, meaning of this dis-order…and was successful. You are just succesful woman! You know the way to understand YOU and express you the best as you can!!!
    With love,
    Ewa

    Like

    • November 21, 2013 at 7:22 pm

      Thank you for your thoughts. It is hard, but we just have to step up when others leave.

      Like

  7. July 28, 2013 at 12:43 pm

    Kerry, We may have different illnesses but I do understand. It’s very difficult to explain a life of illness to someone who’s healthy. They just can’t comprehend all the insidious ways chronic conditions insert themselves into our lives, sometimes even painting the world a different color. Not just the big things but so many little things as well. I’m so glad you found Chronicles Of A Dystonia Muse, leading me to this lovely site. Blogging has been such a wonderful experience for me and I’m thrilled for you to commence your own journey. -Pamela-

    Like

  8. July 23, 2013 at 1:56 pm

    Reblogged this on A Pursuit of Happiness and commented:
    This is a candid writing on chronic illness. I wish I didn’t relate so much to be honest. I agree with the author. People understand illness that ends, they understand death after illness, but not illnesses that persist. In addition, more empathy is felt for certain illnesses than others. People come around near death or after death to help. The time to help is while a person is alive, because while dead, they can’t really benefit. Be proactive in your community. Don’t walk away like many family and friends do. Be different!

    Like

    • July 23, 2013 at 3:18 pm

      Thank you so much for reblogging my blog. I’m new to blogging. This is very exciting for me.

      Like

  9. July 8, 2013 at 10:31 am

    Your husband sounds like mine; We’ve gotta hang onto that!

    Like

    • July 8, 2013 at 12:54 pm

      Mine has been so supportive. I’m really blessed. Thanks for stopping by.

      Like

  10. July 2, 2013 at 11:57 am

    Sometimes people just suck! Its because unfortunately we live in a dog eat dog society where you are only valuable if you are more or less perfect! I understand and am in this case not ignorant. I’m glad that of everybody your partner has not bottomed out xx

    Like

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