Chronic Pain and Avoidance

Making it through the day with an overactive immune system is exhausting. You are trapped in a body that seems hard-wired to misbehave. You look and feel very different than you once were. You find many small things to celebrate. You purchase colorful new shoes because your feet and ankles feel better, you laugh at inane jokes just to feel alive. You hide your pain as much as possible so you can still seem fun and lively, this takes a lot of effort. Normalcy is an adopted attitude.

When you are in your twenties and diagnosed with a lifelong disease, it is a shock that is very difficult to accept. You have medicine bottles everywhere and are told to take this pill four times a day, the next pills you take eight of once a week, one pill morning and night, and another only at night. Disbelief sets in and you are sure that you are not ill anymore. You stop the medicine and the torture starts anew.

Many days it feels like a flu bug. You want to have a quiet day in bed and not talk, listen, or explain yourself. It is futile; I don’t know if people really can’t understand how I feel or are just intentionally horrible. Some people, after all, are just contrary by nature. Here are a few examples of the insensitive remarks I try to dismiss on a daily basis:

  • “You really should get off of all that medicine and just exercise.”
  • “If you would just stop eating sugar, nightshade foods, gluten, dairy, etc, your problems would be solved.”
  • “You look exhausted, what happened to you?”
  • “You must not have a very good doctor if you don’t feel better.”
  • “Are you sure you aren’t just imagining some of this?”
  • “I don’t understand how pain can make you tired.”
  • “You must not be taking your medicine properly. If you were, you would be better.”
  • “Why do you smile so much if you don’t feel well?”
  • “My friend has the same illness, he never seems tired.”
  • “You were fine yesterday, what’s your problem? Oh wait, I don’t even want to hear it.”
  • “I’ve never heard that chronic pain affects your personality, why won’t you argue back?”
  • “Oh, it doesn’t hurt, stop exaggerating, you are a huge drama queen.”
  • “I have pain too, you know.”
  • “Stop making that sad face.”
  • “Wouldn’t we all like to stay in bed relaxing?”
  • “You just refuse to take care of yourself.”
  • If I felt like you do, I would be at the doctor every day, why aren’t you proactive?”
  • “If you would just put some concealer under your eyes you would look a lot better.”
  • “You used to bounce off the walls with energy, are you depressed?”
  • “You’re not a fighter.”
  • “You looked so happy just two hours ago, maybe you have low blood sugar.”
  • “We are all tired, you have to make yourself do more things.”
  • “My grandmother can do more than you.”

It feels like you have a secret. You do, because only you can know how debilitating a painful disease is. You cannot share the secret, you will only be misunderstood or labeled difficult. I do wonder why I have to constantly justify myself. It is such a waste of energy. I find more and more that I am happiest alone. My own thoughts are usually pleasant and clear, although I often drift in and out of a dream world where I am my old self.

It is a strange thing to find yourself worn down by another person’s energy. At one time, I gained energy from others liveliness. Now, I feel that I must ramp up my own strength just to buffer the effects from their unconscious hyperactivity. People hustle and

recuperatingwoman

bustle around me.  They push me to move faster with their grocery carts, or to rush out of a movie after sitting for two hours. They simply cannot understand why I move the way I do. I certainly don’t have the patience to explain. Why must I offer an explanation every time I have a setback. I don’t owe this to anyone. I want to be alone.

 

31 thoughts on “Chronic Pain and Avoidance

  1. Oh my! I can relate to your list of very unhelpful comments. Well people simply don’t know how to deal with sick people very well, especially those in chronic pain who don’t look sick. Plod on! I sincerely hope life will be worth it.

    Liked by 2 people

  2. Welcome to that little voice, and thank you for following my blog. It took me years to accept my depression and realize that people don’t and won’t understand the highs and lows that can accost you. I relate to what you said about getting off the meds, only to realize that was not an answer. I would get to feeling better and decide I didn’t near my antidepressants, only to discover the reason I was feeling better was because of the meds. I think I just wanted to be normal. What I have come to know is I am normal, just the way I am. This is my normal. Good post, and thanks for sharing.

    Liked by 2 people

  3. We have to find ways so that people don’t make us feel bad when we already feel bad. “Get well soon”, “hang in there” “things will get better” are all well meaning encouragement but are really obnoxious and irritating and frustrate us even more.

    Liked by 1 person

  4. This post really resonated with me. I was diagnosed with epilepsy 3 1/2 years ago and had to leave work, couldn’t drive, etc etc. Depression was added to the list. I heard many of the comments you listed above. Also, since I’m in my fifties, I got all of the “it must be menopause, you aren’t really sick.” and “oh, I can’t think straight half of the time, it’s just because we are older. I got to the point where I didn’t want to see anyone from my previous life. I don’t blame you one bit for wanting to be alone. It’s the only way we can get some peace! In our situation, we can’t expect to have great days every day but I hope you have more good days than bad.

    By the way, an earlier commenter wanted to know who the artist was for the painting above. That is the work of Pablo Picasso

    Liked by 1 person

    • I am also in my mid fifties now, but have been hearing this stuff for decades. I don’t think people should act as though menopause is an illness, but maybe some aches and pains are because of that and i just didn’t make the connection 🤔. I do have some good days despite the dark circles under my eyes.

      Thank you for sharing the artist 👨‍🎤

      Liked by 1 person

      • I just wish people would keep their medical diagnoses to themselves unless they are medical professionals. No, my depression is not exactly like your Aunt Bessie’s. And my memory loss and loss of cognition is not something like what you experience because you’re older. Take a week-long EEG and we’ll compare charts! Hehe Julie, now you’ve got me going! I have some good days, too. And I’m really thankful when I do. And you know what? If you ever want to talk about anything with someone who might have an inkling (but doesn’t truly know exactly) how you feel. Send me an email anytime. mainepaperpusher@yahoo.com ❤️

        Liked by 1 person

        • ⚡️🌧🌪What I find infuriating is that often people suggest that the rheumatologist, orthopedist, and pain specialist don’t know what they’re talking about and my pain can’t be that bad. Because I’m so tired I just have to say “you’re right, I’m a liar” I refuse to argue with idiots. My definition of an idiot is one who thinks they are smart. Those who know so much, won’t open their minds to new information if it taxes them in any way, or could possibly cause them to lose face by not knowing more than everyone else.
          Sorry to ramble on, it’s possible I woke up on the wrong side of the bed.
          My apologies to you, I never meant to disregard any thing about your illness, I was kind of inferring that I am sometimes unaware of small issues like menopause, broken bones, sore throat, etc, as I am constantly distracted by bigger pains like my neck, ribs and low back.
          I would be very sad to see your EEG, and lose a driving license, not to mention the sheer terror and dread that must be experienced with seizures.
          Please have a great day🍒

          Like

  5. I envy both of your ability to put this into words so perfectly. I relate to both of you, with physical pain and the yo-yo of depression. It is a lonely feeling when people question you or assume you are exaggerating. Coming to accept “your normal” is so important!

    Liked by 2 people

  6. My husband has chronic fatigue, it’s being going on for years now. No more long walks like we used to do, and he gets brain fog too. Sometimes he’s shattered and sore after just mowing the lawns. He tries very hard to pace himself, and is holding down a job too. When I mention it to friends, I don’t get much understanding eg ‘oh, my husband is always falling asleep in the evening’ …so I can empathise with anyone suffering from chronic pain, because i know personally what it is like to suffer from a chronic condition – I’ve had dizziness and tinnitus myself through my life. When there isn’t an easy solution, people tend to not to want to know. It’s a hard road to travel, but we have to keep going. Wishing you all the very best.

    Liked by 1 person

  7. HI again, Julie. I had ME when I was younger, and this was vital in my relationship with my husband, as I knew it was real for him, like it had been real for me. Like some of the people who’ve posted here, I’ve had depression too, came back with menopause, now on meds and has helped hugely…back to me again. I think you’re incredibly brave and all those comments resonated…sorry you have to put up with them, people can be so dense and very predictable, can’t they? Here’s wishing you all the very best.

    Liked by 1 person

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