The emotional and psychological impact of constant pain makes me feel dead inside.
No really.
I’m sitting here trying to get in touch with my feelings so that I can write a blog post, and I can’t do it because I’ve cut off all my feelings. I’m not supposed to feel sad or frustrated, and so I’ve shut those feelings down with regard to my health. Now I feel nothing.
It’s a scary feeling, realizing that you’re dead inside. Makes you wonder what’s wrong with you and how you ever found yourself in such a place. How did I ever let people convince me that my feelings about my health weren’t valid? At what point did I start listening to the haters and the know-it-alls who supposedly know more than I do? At what point did I give up on doctors and just resign myself to being in miserable pain forever and ever because no one was interested in helping me? At what point did that resignation mean that I was no longer going to acknowledge my feelings about the situation? I honestly don’t know.
The emotional impacts of constant pain
Emotion and chronic pain or chronic illness are complicated. I have fairly healthy self-esteem and I fairly robust “f*** you haters” attitude. And yet here I am. All the stubbornness and rebellion in the world didn’t stop me from shutting down and denying my own experiences and my own body. Years of being ignored, mocked, not taken seriously, and belittled have made their mark.
I have to wonder how often this happens to other people, and what can be done to prevent it. I don’t have any easy answers to that question. It seems one has to entirely ignore every single person around them (including medical professionals) to be healthy mentally. That’s not something that is easy to do. Surrounding oneself with supportive people is of course important, but I don’t know anyone who managed to completely avoid contact with the haters. Even if you have a wonderful family, you still have to fight constant battles with doctors, insurance, and pharmacists. Not one day goes by that I don’t hear a horror story of a pharmacist refusing to fill someone’s medication because they don’t believe the medication is needed. The usual excuses are: you’re too young for this much medication, I don’t think this medication applies to your condition, I’m judging you for taking a controlled substance, I don’t like your doctor, or I just don’t like you.
Not one day goes by that I don't hear a horror story of a pharmacist refusing to fill someone's pain medication because they don't personally approve. Why are pharmacists replacing doctors? Click To TweetIf you can’t even go to the pharmacist without getting harassed and belittled, how can you stay strong and true to yourself and your emotions? I don’t think the typical pat answers for coping will do here. There’s a reason that people with chronic pain/illness are three times more likely to develop depression and anxiety than healthy people. When you google suggestions for help with this the advice typically states suggestions like “assemble a good health care team”. Well, what do you do when no one wants to help you because you have chronic pain, and chronic pain is now the same as addiction? What do you do when your condition is no longer recognized as real? This has some real emotional consequences, and ignoring them isn’t helping anyone.
I don’t know where exactly I’m going with this post. I originally wrote this on a bad day because I just wanted to write a purely honest post about how hard living in pain can be in every aspect of your life. Even though not every day feels like this (some days you wake up fighting the good fight), chronic pain touches absolutely everything, even when you try to keep it from doing so. Everyone reacts to this differently. I’ve reacted by shutting down my emotions and separating myself from people. Others react by acting out and seeking attention, pushing themselves beyond their capabilities, completely retreating from life, or by obsessing about their health, everyone is different.
I guess what it comes down to is more awareness. Healthy people need to be more aware of the complications of living with chronic pain. Doctors need to be more aware that wishing things better isn’t a valid treatment option. Family members need to be aware that people with chronic pain are doing the best they can with the hand they’ve been dealt. People in pain need to be aware that they’re coping the best they can, and that’s okay.
It hurt my heart to read this. I am so sorry, for everything you’ve been through, for the way you’ve been left feeling. I don’t really have any answers or ideas, but I will say that you’re not alone. I have times where I feel utterly bereft, too exhausted, too ill, to angered and disheartened that I feel I have nothing left. You wonder what all of it is for, and whether you have the energy to pick yourself back up again and find that warrior spirit to keep going. But you will. You owe it to yourself to have the best life you can have with the cards you’ve been dealt. You deserve to feel better than you do. But it’s okay to feel like this, so don’t push yourself too hard right now. Maybe you need time out of it all to recuperate and nourish your soul a little. Hang in there, you’ve come through worse before and you’ll get through this too. I’m sorry I can’t offer anything of any use here, it truly does suck feeling like this ♥
Caz xx
Thanks for your comment Caz. I wrote this on a bad day, and am feeling less fed up and exhausted now. Living with illness is such a roller coaster!
This was spot on, I also am dead inside, it’s a survival instinct.
We are easy targets for the ignorant and the uncaring.
It is my 62nd birthday today. I woke up with a cat one side of my pillow and my little dog on the other and, just for a few moments, no pain anywhere. Then I woke up properly and there it was, the invisible enemy. Counting backwards as one does in these miserable moments I calculated that taking into account the horrendous pain caused by undiagnosed endometriosis, regular migraines, and for the last 30 years, fibromyalgia, I have lived with this invisible enemy for half a century. We still don’t get on very well.
I am one of the lucky ones. On the UK for the last decade the government has been busily dismantling the welfare system. Having struggled for so many years to carry on working while feeling increasingly I’ll it was always at the back of my mind that if I did make the fibro worse, if I could just make it through to the the age of 60, I would be able to retire on the state pension. Wrong! Health gave out at 50. Welfare benefits to the rescue, but with tribunal appearances and appeals involving me in basically begging the experts to believe that I am not just pretending to be too ill to work, adding to the burdens of pain, stress and depression. Then our government in the name of austerity changed the women’s state pension age to ,66 and THEN they took away my entitlement to welfare benefits. If it wasn’t for the charity of a friend my dog and cats would be homeless. So would I.
The worrying thing is, I am actually one of the lucky ones. I was brought up the hard way, constantly making the best of things. If I allow myself to brood about the life that the invisible enemy has stolen from me, with no energy to spare from the struggle to keep working for relationships, social life and all the other pleasures that only normal people are entitled to, then the pleasures that are left to me are shoved away and all the lovely things still in my life are neglected as I then feel that I do not deserve them. Prescription meds together with a pint mug of strong tea and, if the household budget has allowed, a couple is squares of dark chocolate, can help the climb out of this doomful pit to some extent, as can giving in to the pain and returning to my bed with a hot water bottle.
What are some of these pleasures?
I have a garden currently burgeoning with apple, hawthorn and clematis blossoms. I never imagined that I would be pulling up violets as weeds which are surprisingly invasive ( incidentally, I now leave these until after flowering for the early bees and other insects to enjoy. Their perfume has pain relieving qualities. You have to put your nose right into a flowering clump and give a loud sniff, after which your sense of smell is numbed for hours. Useful if a migraine threatens)
Just thinking about my garden has rescued my birthday morning and reminded me of the enjoyable experiences I can store up for when the mood darkens. Thank you for allowing me the opportunity to share both the bad and the good of my situation knowing that you all understand and care. I am horrendously sad for all of us in this situation. May all those who interact with us grow in understanding.
Kindest regards
Anne
If I tried, I could probably come up with a handful of times health care professionals have been compassionate with me. Once my psychiatrist in Germany said my depression didn’t manifest itself in the usual form. He said, “I’d be depressed too if I was tired all the time.” He understood!! My condition was a reaction to my exhaustion. They don’t understand generally, none of them. Friends, family, doctors, etc. My husband is very supportive of me generally and I love him to pieces. But, he told me once that he didn’t think anyone could understand unless they’d been there. And that included him. So now I don’t blame people so much for not getting it. The don’t because they CAN’T. They don’t have the capacity or the time or the understanding or the empathy/sympathy necessary to get it.
For myself, I keep a mental health professional on speed dial. That has been my life saver. If you don’t have the means of getting to one, get to a support group. If the mental pain becomes unbearable, lay yourself down on the floor and admit defeat and have someone get you to a hospital by whatever means necessary.
Shelley, I take every cry for help seriously. I didn’t once and I lost a dear dear cousin. Today’s post seems like a cry for help. If you need me, I’m only three or four hours away. Or we can talk on the phone. Please reassure me, and the rest of us that rely on you to be our voice, that you are getting the help you need. I tend to be an overreactor so if I’m doing that right now then so be it. It’s in my cousin Debbie’s memory that I do. And just because we rely on you, doesn’t mean you don’t have the right to take care of yourself exactly as you need to. You absolutely do!! I’m sorry you’re in double pain, mental and physical. Pain is a damn bitch!
Thanks so much for your comment Carol. Don’t worry, I do have a therapist. I don’t think I could get through this mess without one! I wrote this in a not great moment, and it doesn’t represent how I usually feel. I almost didn’t post it, but thought I should so people can see the whole picture. I do love the idea of finding an in person support group though, that would be amazing.
I’m so glad you have a therapist. I think anyone living with chronic pain goes through days like that. Thank goodness you have a good support system. Me too. Pain is still a damn bitch!
Thanks for the information.
I was a successful, happy, outgoing individual, and I trained sport horses until a doctor ruined my life leaving me in constant pain through a botched spinal surgery that caused nerve damage. I “look” fine. In fact, I receive many compliments, yet, I have searing nerve pain in both of my legs. There are MANY days that I wished I had died during that surgery. I do have prescribed medication that I can take, but, I suffer tremendously from the one side effect we all can relate to- my gut seizes up. Unfortunately, pain medication stops the motility. Where does that leave us? I know any/everything about a proper diet. No one understands except my wonderful husband. I’ve lost my life due to a negligent doctor….
I have the same issues with pain meds. I started taking Probio 5 from Plexus just to combat IBS and it has helped with my gut motility like I never imagined. It literally changed my gut health. For about $30 a month. I’ve been on Linzess for a couple years at $400 a month. It didn’t help even 10% as well as Probio 5.
I’m so sorry Charlotte about your negligent doctor, that is horrible. I had the same problem when I was on pain meds, it didn’t matter how much fiber I ate, I had to down the liquid stool softeners (which I’m sure isn’t good for you). I hope you can find something to help.
Thank you! You’re honesty told me I’m not alone in all these feelings. Your blog matters. You matter. Reading your blog is improving my chronicle painful life.
Thank you so much for your words Sara, they made my day!
Very well said and heartfelt for sure. I’ve lived in chronic pain for about 25 years now. I just remind myself daily to put one mental/physical foot in front of the other. I too am getting off as many pharmaceutical as possible. You might check out the S.H.I.N.E protocol. I have a friend who has been in remission for fibromyalgia 10+ years. She has written 2 books, runs a support group if you are interested in contacting her I.M. me. All the very best to you! Warrier strong! Research is showing real progress towards understanding this.
I’ve never heard of that, I’ll have to look it up.
Your post said so eloquently what many of us often feel at times, yet can’t find the right words to describe. Thank you for that. In my earlier years, I was such a Pollyanna, determined to still have my cake and eat it too. I helped start 2 FB support groups, one that I still own. Now that worse pain, and what the DEA et. al. have done to the world of pain management, I have less good days, more people talking to me like I’m going to end up a junkie (I haven’t abused pain needs in well over a decade and don’t want to be on them period….I want a normal life, so b*tch please!), and way more of a f*** it attitude than I ever thought I would have on some days. I love my medical team, but hate the game we now have to play to be “compliant”. My only solace is knowing they hate it too. My PM doctor has chronic pain as well, he at least gets it, and I was with all of them before this crap started, so they know ME.
Some days that little Pollyanna buried deep inside comes creeping out and wants to be the “hear me roar Pain Warrior”, but some of the time, it’s slap on some make up (sometimes that’s just tinted moisturizer!), plaster on that fake-for-others smile we’ve all mastered (if they took the time to look, they would see it doesn’t reach our eyes… they’d only see pain and/or fatigue there), and plow my way through whatever I need to do. Some days we deserve a medal for just managing to make it out of bed! I really liked someone else’s suggestion about medical professionals having to take a day in the life class taught by people with chronic pain. They’d be in for a big shock I’m sure over what we really go through!
I love how you described this! I think I have a little Pollyanna in me too.
We are easy targets for the ignorant and the uncaring.
It is my 62nd birthday today. I woke up with a cat one side of my pillow and my little dog on the other and, just for a few moments, no pain anywhere. Then I woke up properly and there it was, the invisible enemy. Counting backwards as one does in these miserable moments I calculated that taking into account the horrendous pain caused by undiagnosed endometriosis, regular migraines, and for the last 30 years, fibromyalgia, I have lived with this invisible enemy for half a century. We still don’t get on very well.
I am one of the lucky ones. In the UK for the last decade the government has been busily dismantling the welfare system. Having struggled for so many years to carry on working while feeling increasingly ill it was always at the back of my mind that if I did make the fibro worse, if I could just make it through to the the age of 60, I would be able to retire on the state pension. Wrong! Health gave out at 50. Welfare benefits to the rescue, but with tribunal appearances and appeals involving me in basically begging the experts to believe that I am not just pretending to be too ill to work, adding to the burdens of pain, stress and depression. Then our government in the name of austerity changed the women’s state pension age to 66 and THEN they took away my entitlement to welfare benefits. If it wasn’t for the charity of a friend my dog and cats would be homeless. So would I.
The worrying thing is, I am actually one of the lucky ones. I was brought up the hard way, constantly making the best of things. If I allow myself to brood about the life that the invisible enemy has stolen from me, with no energy to spare from the struggle to keep working for relationships, social life and all the other pleasures that only normal people are entitled to, then the pleasures that are left to me are shoved away and all the lovely things still in my life are neglected as I then feel that I do not deserve them. Must try to make the best of things! Prescription meds together with a pint mug of strong tea and, if the household budget has allowed, a couple is squares of dark chocolate, can help the climb out of this doomful pit to some extent, as can giving in to the pain and returning to my bed with a hot water bottle.
What are some of these pleasures?
I have a garden currently burgeoning with apple, hawthorn and clematis blossoms. I never imagined that I would be pulling up violets as weeds which are surprisingly invasive ( incidentally, I now leave these until after flowering for the early bees and other insects to enjoy. Their perfume has pain relieving qualities. You have to put your nose right into a flowering clump and give a loud sniff, after which your sense of smell is numbed for hours. Useful if a migraine threatens) and dogs, cats, and the good friend whose home I share.
Just thinking about my garden has rescued my birthday morning and reminded me of the enjoyable experiences I can store up for when the mood darkens. Thank you for allowing me the opportunity to share both the bad and the good of my situation knowing that you all understand and care. I am horrendously sad for all of us in this situation. May all those who interact with us grow in understanding.
Kindest regards
Anne
My neurologist just gave me yet another pill – celebrex. How many of you have been put on this and do you recommend it? I’m on quite a few other things as well. This one is supposed to help with pain but I am getting headaches with it and itching. Not sure I want to be on it since it thins your blood and has a chance of causing heart attacks. I do have a healthy heart and he says I’m at no risk. Just wondering what others think.