The Hidden Cost of Chronic Pain

Chronic pain turned my life upside down and inside out.  I had to give up my rock climbing, skydiving, and white water rafting.  I cried as I signed the paper work to sell my motorcycle.  Seeing anyone dancing is a stab in the heart of intense longing.  Even keeping up with work became a challenge, whereas it was once a joy.  Chronic pain stole my life.  One I worked very hard to build. But you know what?  These were predictable losses when you spend the majority of you time in bed trying not to scream, hoping you will just pass out and maybe, just maybe, get a break.  Yep, it was predictable that many of my hobbies had to go.  What I didn’t see coming was how many friends it would cost me.

I would not have been surprised to come home and find this.

I would not have been surprised to come home and find this.

When you are in severe pain you aren’t the most social person in the world.  Pain brings your focus down to a pin point focus aimed at finding some relief—any relief.  So when a friend calls to ask if I want to come hang out and have dinner, like we have for the last ten years, I have no choice but to decline.  Even as I long for a margarita, some good Mexican and hours of girl talk and laughter.  Of course I want to go, I want that little slice normality more than anything.  However, drinks and laughter isn’t what it used to be.  Instead it means I have to watch my meds so I can drive and would be relegated to a virgin margarita.  I would have to set a place at the table for my pain because it was coming invited or not and it’s a noisy and demanding companion.  My pain would be so loud that I would have trouble hearing the girl talk, miss all the laughter and to top it all off,  after all that effort,  I would pay for it later.

I was banned from Margaritaville.

I was banned from Margaritaville.

With all this in mind when the calls, texts, or emails come in I become very selective about what invitation I accept, but it is not what you think.  I haven’t ranked my friends in order of importance, though I have stopped maintaining acquaintances.  My decision to stay or go has more to do with what the activity is, how long of a drive, how many people, do I have places I can rest, if I get into trouble am I somewhere safe and with someone I trust.   It’s a lot to calculate and fewer and fewer situations met my needs.  So over time I accept fewer and fewer invitations, then, of course, the invitations stop coming in.  It’s a sad thing to happen, but I understood.  People get sick of hearing no.

I only went out when the conditions were just right.

I only went out when the conditions were just right.

I get it, I really do, but what I didn’t expect was some of my friends turned on me.  Some people didn’t just stop calling, instead they took the time out of their day to attack me.  I was told how I changed and how awful I am now.  I was told I was selfish.  I was told I was mentally ill and should seek help.  I was told I was so much less than the person I used to be.  I was attacked in person, on the phone, and on the internet.  I experienced cruelty like I never had in my life before and this was all happening when I was already struggling to simply survive.  It was a day by day process and when the attacks started I was caught completely off guard. I had been pretty much bed ridden for almost a year and could not for the life of me figure when or where I could have possibly offend these people so terribly.  Most of them I hadn’t seen at all in that time.  Everyone knew I was sick, so they knew I wasn’t just being a jerk.  Didn’t they?  What did I do?  And when on earth did I possibly have the chance to do it?

I still don't know where this came from.

I still don’t know where this came from.

I was devastated.  I was in physical pain all the time, but this was a whole other kind of pain.  One on top of the other was agonizing.  Everything hurt.  The world seemed so wrong, not at all what I had previously believed it to be.  It was a cruel and angry place.  Even though I backed away from everyone that was angry with me the attacks continued for some time after.   I never did figure out what I had done to some of them.  I’m not entirely sure they even know.  Before all this I had a lot of faith in the basic goodness in people.  This experience was traumatic enough to alter that.  Completely.  Now I expect the worst so I can be pleasantly surprised instead of blindsided.

Me...for months.

Me…for months.

 

For as much as all of this was a total shock to me, I had one more coming.  When I started to talk to other people who had a severe illness (even cancer patients) they had very similar stories and it was quite clear that they were just as hurt by it.  I’m not sure what brings this behavior on, I guess it is another side effect of severe and chronic illness.  My best guess is that some people have trouble facing mortality and being your friend is a little too real for them to handle.  Maybe they don’t want to deal with your new limitations.  So they kill the relationship.  Why it has to be done so violently, I’ll never know.  So if you find yourself attacked by people you believed would support you, just know you’re NOT ALONE.  This is unfortunately par for the course.  There are other people out in the world that will accept you as you are and be a real friend.  You just have to find them.

 

It happened to you too?!

It happened to you too?!

What about you? What is your experience with friends adjusting to your new life?  What do you think causes this?

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 anxiety, caring, Chronic Illness, Chronic Pain, compassion, conditions and diseases, confused, coping, depression, family, fibromyalgia, friends, friendship, health, helping, invisible illness, lost, love, Medicine, pain management, understanding and tagged , , , , , , , , , . Bookmark the permalink.

22 Responses to The Hidden Cost of Chronic Pain

  1. steven1111 says:

    My chronic pain and illnesses have caused me to have to leave many circles of community in my life that didn’t meet my needs. I was trashed by some of them too. I don’t understand it since they said they were my “family”. What lies they tell. I have almost no friends now and I used to have dozens, I thought. I was wrong. Only a few understand what it’s like to live with chronic illness and most don’t care to try to understand. It hurts as much as the illness does and adds insult to injury. Your post make me want to cry it’s so close to home and so real for me. There are definitely others like you and me here on this site and in life. Talking about it is the first step in overcoming it and you’ve done a good job of telling it like it is, warts and all.
    Thank you,
    Steve

  2. Kim Gray says:

    Friends, what are they ? It feels like everyone has deserted me and I’m not willing to take anymore chances with anyone new because no one really understands our new life living with chronic pain. Thank you for putting everything so eloquently and I feel your pain.

  3. Di Kirk says:

    Thanks for sharing this. It is very hard to understand how people can be so cruel…I like to tell myself that people’s reactions are really nothing to do with me but are something in them that feels threatened or frightened or maybe even rejected or let down. I would love to know the Psychology behind these reactions and behind the general dismissiveness and doubting of many people to those with chronic illnesses. If anyone can explain I’d love to hear it……

  4. ann higgins-salo says:

    True friends will be there for you but they do need to be with someone who – doesn’t complain all the time about their symptoms/illnesses, is not overly melodramatic, shows a real effort in living life, is socially engaging with a positive attitude, and puts one foot in front of the other and pushes on. Easy, definitely not, it is a challenging life. This is not a “dress rehearsal”, you get one chance to live life and that’s now.

    • Debi says:

      I agree with you Ann, but I also believe that there are some people that don’t have the energy left to lift one foot and put it in front of the other. For some it may be a matter of getting to the point of mentally making the decision but for many it is truly that there ISN”T any energy left to make the step. They want to but just can’t.

    • Priscilla says:

      I do agree. I finally met someone who breathed new life into me. There are still the bad, painful days. I push myself physically beyond my imagination on most days. My change in attitude & strong will has been noticed by so many. My illness has turned into a blessing. People see a sick woman doing more than a normal healthy person so I ignite change in their lives. Now I cant give up because I cant let all of these people down that I have inspired.

  5. Mandy Nielsen says:

    I’ve had this experience too, from some people. I think, in part, it stems from fear – people are scared that if something like this could happen to someone like you – previously active and engaged in life – then it might also happen to them. They sense a lack of control over life, and they project this fear on to you. This doesn’t make it any easier to handle, but there’s not much you can do about it. I focus on the quality of my remaining and new friendships, and just try to let the hurt from others go.

  6. Your pain is very understandable. I guess in a way I got lucky. I lost most of My “friends” when my ex-husband decided to leave me for a younger woman – because she didn’t complain as much. I was paying too much attention to my pain, and ignoring his problems. So, I lost him (not a great loss in the end) and most of my friends as well. They don’t know what to say then either!!! The hardest part was losing our income. I went from living with over $100K a year to living with $35k a year. And $15K of that was his alimony which the government wanted to claw back. Within 3 years I owed them over $6,000. I had had to quit work because of the pain and depression and I just wanted to die. Fortunately I had a wonderful psychiatrist who kept telling me how strong I really was, and I had a wonderful son who started searching for help for me. He found forms to apply for the disability papers which I was originally rejected for, until my wonderful psychiatrist wrote them a proper letter. They backdated the pension to when the pain was first documented, and all the money I owed went away. What a great day that was!!! Then the ex decided to retire because of poor health and could no longer pay the alimony, so I had to sell my house which was by now mortgaged up to the hilt, but at least I had it. We moved to a much cheaper area of Ontario, but the air is cleaner, the people nicer and the atmosphere more relaxing. The money is still a problem, but both my son & I have learned to cook better and make do with much less. I found a good debt consultant who is helping us pay off the rest of the debt – apparently being only $30K in debt is not enough to write it off – you have to owe more than $100K and be called Conrad Black!!! But when I do get out of this hole, I will not owe anybody anything. Of course being 66 years old has it’s down side – I will be 94 when I have paid off the mortgage – but I will party down then!!! The few friends I have left have learned not to push me to visit or call. They wait for me when I AM FEELING BETTER. And they all tell me to look after myself first – if I need them they will come!!! I can usually walk without a cane now, but it comes and goes. Having less stress in my life seems to have helped the pain ease a bit. I will be attending a Living with Chronic Conditions Seminar for 6 weeks in a couple of weeks, so I am still looking for help! I will also be starting an experimental serum for allergies/asthma tomorrow and if that works I may be able to get off the puffers (4) and prednisone as well. There is about a 20% success rate, but at least I’m trying. So don’t give up!!!!! Where there is life there is hope -and I truly believe that now. Thank you again for this blog – it helps me too. I only hope my story will also help. There are a lot of people out there in the same boat – and no we don’t like to talk about it because it keeps the pain front and centre and I, for one, don’t want to “bore” people with my problems. So keep blogging – the support is awesome. And the best of luck to you – may God bless you all.

  7. Mar ney Mathison says:

    Well, I could talk about losing my 20 yr career, home, car and marriage. But I’m going to talk about how I changed from a materialistic bitch to a spiritual, loving, nonjudgmental empathetic person who cares less about things and cares more about the world. Being in bed with chronic pain and suffering causes you to know what is important. That’s the gift.

  8. Dorothy says:

    Thank you for saying all the things I’m just too tired to!

  9. Leah says:

    I could have written this!!!!! I have depression from pain and loss. I have no friends anymore, except on social media. My own twin won’t hang around me anymore!!! I thank God for my husband who is the only person that has stuck by me. Prayers for you all, and for those who have hurt us.

  10. captainpotter@hotmail.co.uk says:

    Thanks for this fantastic, well written blog. I linked to it on my Facebook and a few friends found it helpful towards understanding me. I finally had the courage to delete one friend too. I’m in the process of losing my job after 4 major spine surgeries and constant pain. It felt so nice to read your words and feel understood. Thank you. I’m researching spinal stimulator just now.

  11. Carol says:

    This wasn’t meant to show email. Please hide address if poss. Carol :-)

  12. Priscilla says:

    I have been through this & even within my own family. I lost friends, they attempted to understand but also got tired of hearing me say no to every invitation. My husband at the time couldn’t handle seeing me stripped of all the activities I loved to do. I was completely abandoned & forget dating. Once my illness was brought up the night was cut short or some other reason to flee. It sucks to be abandoned by loved ones because of something you can’t control.

    • leitis23 says:

      It is a very hard thing to live with. There are people out there who will understand. Unfortunatley it does take a lot more looking and patience. I haven’t dated in ages, but when I do I’m always caught between leaving it alone for a while or telling them upfront so no on is wasting any time. It isn’t who I am, but it is a big part of my life.

  13. Marlene says:

    I am a part of this group of people who have lost much, is in a bit of debt as a result and doesn’t talk about it as a rule because I don’t want to have it be my focus in life. While I get that we are all in a bad way physically my favorite comments here are the positive ones that get that the gift of this experience is more gratitude, and appreciation for the good in life.
    My question to us a whole is since we are in it, and obviously couldn’t have avoided it or we wouldn’t be here is what is the silver lining? Please, before you defend your position as I would have not so long ago, since we are IN IT, what is next? Where do we go from here? Do we stay incapacitated or do we try to find the way back to where we were? That’s the choice. If there is no recovery from where you are, what are the newest natural remedies for pain? Please don’t ever forget that there is hope.
    I for one do not want to hang around the support groups to listen to others gripe, I want to hear about those who have gotten better, and learn how to do the same.
    What I am seeing in all of the comments above is that we have lost our life as it was including a circle of friends that it seems to me we might be better off without. I don’t care to figure out why they were mean, that is their row to hoe. I know it hurts, but if we rise above it, and don’t stay in that zone we make room for more and better in our lives.
    I may be fortunate that back surgery wasn’t required, and I don’t have kids to take care of, or a husband who lost the woman he married, but those were my life choices at one point. Speaking of life choices, I believe that is why we are where we are now. I think some of those statistics about types of people who get certain things, could be right. Am I carrying other peoples problems and need to learn to put my shields up more? Am I eating the wrong things that make my situation worse? Was I allowing the wrong people in my life? Did I not believe in my metal abilities as much as my physical ones for too long? Did how I was raised as a farm kid have to do with how I reacted to my injuries, and is that why I kept going back to work instead of realizing I needed help sooner? Did all of that farm work set me up for an inevitable injury because I was already hurt? Did I get too used to being in pain, and unhappy that it started to feel like normal??
    I’ve got at lot of questions that need answers, and that is what I mean by the silver lining. It is possible to reinvent, or rediscover ourselves and to rise like a pheonix into a better existence. That is not scary to me, what scares me is not having the courage to reach for better.
    I identify with you all and reading all of the comments gave me such a feeling of the familiar but also of a humongous sadness that I could not just let be, I had to write to you. I want you all to feel love and compassion from this message because I so feel it!
    I am learning that we are all one, and that we need to have love and understanding for each other and to put out our hand to help each other. I believe that every bit of good and light that is shone in a positive way makes a huge difference. The other very important thing that I learned is that we are what we think! I read that worry is like praying for what we don’t want. Yikes!
    When we worry about lack of anything that is what we get more of.
    I’ve been in pain and in this shared situation for exactly 20 years now. Wow!. Where did that time go? 20 dateless years!! I know where it went, and exactly what percentage of it was spent in negativity. I never could have imagined this was going to be my life. Happily, it turns out that I get to imagine what the rest of my life can be and to work on making it happen :)
    Lots of love and hugs to you all.

  14. Ah nice to see that there are people that care enough to write , my own best wishes as I could not possibly have said anything that isn’t already said better on here by your friends again best wishes Alex

  15. Elmsley Rose says:

    I’m actually crying. And I never cry! It physically hurts, so best avoided if at all possible. What I am sorry for is not having been through exactly the same things myself – but to read ‘our’ story so well and clearly written. I’m so sorry that you had to go through this.
    At that stage of my life (the first 2 years) I even ended up with an internet stalker who was determined to make my life miserable because ‘I had rejected her and she wanted to punch me’. But now, 15 years later, I have many wonderful friends. Some of whom aren’t even chronic illness/pain sufferers!
    One day at a time :-)

  16. I find that when you have Chronic pain,Fibromyalgia, and OsteoArthritis people feel you are broken.when you are broken you are no use to them. I have 3 friends- my Mom, Claudia and my dog Lola. I have what used to be my best friend who has “MS” but is able to canoe,ride a bike,walk her dogs etc and I never hear her complain about pain. I also have sleep apnea and can’t use a c- pap but she made it a point to tell everyone how loud I snore and she had to go into another room to sleep…talk about embarrassing!

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