Why People with Chronic Illness Rarely Take Your Advice Well

People with a chronic illness live with their illness like Olympic athletes live and breathe their events day in and day out.  Except for one major detail, we didn’t choose to be chronically ill and we don’t love it.  We do, however, know it inside and out, think about it, deal with it,and  manage it, every single minute of every day of our lives.  We know our bodies, we know our illness, we have tried all kinds of treatments from the expected to treatments you have never heard of and neither had we until we were faced with trying to survive this illness.

juggling

We are trying, it just doesn’t always work out well.

So, when I mention that I am struggling, with pain, fatigue, I’m having seizures, or can’t seem to control my hands this week and your response to my struggles is to mention that maybe yoga, or lyrica, or a cortisone shot, or vitamins, or a diet, or whatever it is you recently  heard or read could help with whatever random symptom and my response to you is less than enthusiastic.  Let’s be honest, I want to tear your head off…and I’m not alone.  This is the general feeling about advice when the chronically ill are struggling through a particularly rough time.  Mind you, this isn’t because we are total jerks and don’t understand the fact that you are trying, in your own way, to help.  We know that; it’s the reason your head is still attached to your shoulders.  The problem is that it’s not only not what we need, but, for us, it also comes with a lot of negative connotations.

Here are  5  ways I can take your well-intentioned comment negatively.

Me, “My pain has been really high this week. I’m having a hard time dealing.”

You, “Have you tried yoga? I have a friend that does yoga every day and it really helps her pain level.”

  1. I hear you suggesting that I’m not trying hard enough to manage my condition.  That I could be doing better.
  2. I hear you suggesting that I haven’t done enough research to already know about yoga, which I assure you, anything you just read about I learned about and tried twenty miles back.
  3. I hear you suggesting that I’m not intelligent enough to have figured out something so very basic.
  4. I hear you suggesting that I’m not doing everything in my power to get better when that is all I’m doing.
  5. I hear loud and clear that you don’t understand my situation and now I not only feel in pain and miserable, but I feel lonely because we have experienced a disconnect.

I’m fully aware that most of those are absolutely my baggage and you really weren’t saying or suggesting any of it.  I know you meant well and I can logic it out on all of those except the last one.  We have, in fact, experienced a disconnect.  I wasn’t looking for advice, if I was I would ask for it.  I was looking for kindness and support.  Unfortunately, our society doesn’t teach us how to deal with long-term illness and suffering.  We don’t know how to sit with someone else’s pain and just hold space for them.  We want to move, to fix it, to make it better, to do something, that is what we have been taught.  It’s wrong.  With chronic illness, we need you to sit with our pain and accept it thereby accepting us.  I understand that people love me and want me to feel better, but really, it’s not in the cards.  So asking me if I’m better makes me feel like I’m disappointing you.  There is nothing I can ever do to make many of my illnesses better.  They will, instead, deteriorate with age.  I have come to accept this, and all I want is my loved ones to accept me as I am.

Me and kittens2

The kittens have no problem.

So instead of trying to “help” or “fix it,” here are some very welcomed responses when we are struggling.

  1.  I’m sorry you’re… “hurting,” “having a tough time,” “going through this.”
  2. I love you and I’m here for you.
  3. Is there anything I can do for you? I’m going to the grocery store, do you need anything?
  4. I’m sending lots of hugs.  Do you want to talk?
  5. You’re so brave, I don’t know how you do it.

These statements are of love and support, it can be hard to just sit with someone who is suffering, but there really isn’t anything to do but love them.  Honestly, that’s all I ever want when I’m really suffering.  To know I’m loved and supported and if I suddenly need a ride to the ER I’ve got one.  It’s not a tall list of needs, considering I may be staring down grande mal seizures or debilitating nerve pain or a loss of hand coordination or vertebrae that are crushing major nerves and my spinal cord or a heart that doesn’t beat well enough to get blood to my brain, etc.  My loved ones can’t fix any of that, not even my doctors can fix a lot of it, but they can sit with me and support and love me as I endure it.

Hugs300

 

 

Advertisements

About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anger, anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, depression, disability, fibromyalgia, friends, friendship, health, helping, hope, lupus, mystery diagnosis, Mystery Illness, pain management, rheumatoid arthitis, struggles, suicide, understanding and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

9 Responses to Why People with Chronic Illness Rarely Take Your Advice Well

  1. Cynthia says:

    Beautifully written ,Kristen, as always….love the picture with the kittens

  2. Juli says:

    My favorite is, “Oh! You look nice today. You must be better.” Umm, no. I just took a shower and put on clean clothes. Those two acts fatigued me to the point of tears. My pain never lets up, but I’m happy you think I look nice today so I’ll just say, “Thank you.”

  3. Nancy Peterson says:

    Ugh. Yoga. Why is it always yoga? I have Ehlers-Danlos Syndrome. Yoga could easily cause permanent and severe damage, yet everyone still suggests it. I even had a doctor threaten to withhold treatment if I didn’t take up yoga. I appreciate the thought, but telling me that I should try something that would be dangerous for me only shows that they have no idea what they’re talking about.

    Sorry, personal peeve. Love the posts. I’ll be sharing this one. 🙂

  4. Natalie says:

    I just want to say how much I love your writing. You manage to say everything I would like to say, but can’t think well enough to get the words into a blog in such a beautiful way. It makes me feel not so alone. Thank you. And by the way, you are extremely brave in this incredibly painful and difficult circumstance. Hugs.

  5. joe accordino says:

    damn your good

  6. Gary says:

    Yoga? when you are In pain it is a great time to join a cult. Have you tried Smokin?
    I have a friend who enjoys that.
    Well you look Great, If I was sick I would want to look like you
    you don’t look sick….no you don’t I’m just saying you look really healthy What is the illned you have? oh I have never heard of that.
    (There is no cure and they don’t know what causes it)
    OH well, just be positive it will cure anything. I heard like all illness is in your mind
    have you tried being more positive? Maybe you should try Raiky or have the people at a church lay hands on you faith is a great healer some say. Have you tried
    Colloidal silver?
    PH water?
    Juicing
    No Carb Diet
    No Gluten
    Acupuncture
    Massage
    Cranial fluid release
    you look great!
    one million various pharmaceuticals
    Frankincense?
    Myrrh? (Jesus Used em)
    Slippery Elm
    Dioenaseous earth
    The Stuff in the wine bottle made from cactus
    that the chick on TV uses?
    Weed
    Deep Breathing
    Meditation
    Not Thinking about it
    what do you mean you cant go to the event we planned?
    Sick? You keep saying that and you look fine I don’t understand. I am gonna go talk to you later.
    Oh you should work on your people skills you’re so grumpy and negative

    • Cynthia o. says:

      Great to hear you, Kristin….miss seeing you. I have gone downhill. Such is life. Are those all your kittens? Did you get a bunch of kittens? So cute! Love that picture…❤️Cindy from group

  7. MarthaPowers says:

    Today my doctor told me yoga! I replied, “that is the meanest thing you could say to me!” I have not been able to lay on my left side in two years or able to bend my ten toes in two years. She told me “tonight” I will go home and research CPRS OR RSD. I said that would be lovely! She said that she could write me a prescription for PT. I said let’s wait and see what Pain Management Doctors want to do. Have recently been diagnosed.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s