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I am a person, not a pain patient

Jul 17, 2015 1:17 PM

Back in the early days of being a chronic pain patient, whenever I met with somebody or called somebody, their first question was "How's your pain doing?". The conversation usually continued with "have you heard about this new therapy/test/diagnosis called ..." or "a friend of mine had that too and he did the ... treatment/test".

Initially I appreciated the questions about my pain situation and the suggestions. But after some time I just couldn't hear it anymore. I was sick of telling the same story over and over again and I was sick of trying out all the different things that they had mentioned.

My psychologist who I was seeing back then told me that this is a common problem. He gave me very valuable advice: "Tell everybody around you, that you no longer want talk about your pain, unless you bring up the topic yourself."

I did so and it was a major relief :-) Well, it wasn’t quick and easy because many of my friends and family fell back into the old pattern of bringing up the topic themselves. I had to remind them and explain why I did not want to talk about it (because some of them felt offended that I did not want to "accept" their support).

I told them "Look, everybody is talking to me about my pain. I know it's because you all care about me. But it makes me feel like I am being reduced to being a pain patient and nothing else. There are plenty other topics we can talk about. Pain already plays a major role in my life, I don't need it to play a role in our conversations (unless I bring it up myself)".

You have the right to ask for that.

Once everybody was sticking to the rule (and I stopped talking to those who just didn't get it) I started feeling like a real person again. And I learned that there are still areas in my life where I am the one who dictates what's happening and not my pain.

Are you a person or a pain patient? ;-)

Kind regards,

Jul 17, 2015 2:14 PM

I am a person who struggles with chronic pain. I answer questions by others and I don't resent them because it shows they care. I don't allow all the conversation to be about my pain though, because I am more than just that. I attempt to stay positive because it helps me through the bad days. And by staying positive it helps me to see humor and enjoy life more than I did last year and before. I am a person who lives with chronic pain, one day at a time because they are ever changing. I laugh, I cry, I joke, I hope, I love, I pray, I hurt... I am only human. I wish everyone a blessed day with less pain! 🙏🌼

Jul 18, 2015 10:12 AM

Many Thanks for your reply FlappysLady. It sound like you have found a good balance between talking about pain and not talking about pain. In my case I was just fed up at some point and did not want to talk about it at all.

I must add that nowadays it is no longer annoying to me to talk about pain and I am not applying my rule very strictly.

Have a great weekend

Jul 18, 2015 10:17 AM

I think so Daniel, thanks! 🙏🌼

Sep 13, 2015 7:05 AM

At the minute it's complicated because I've moved school so people have a lot of questions and I keep my answers very brief and often fairly vague.

I'm going to make a post about this because I'm finding being in full time school hard

Sep 13, 2015 10:32 AM

I live with someone who denies pain because he doesn't have it and will never understand it. It is frustrating because who wants to keep arguing about limitations. At first I sent articles about spoon theory, tried to explain, but nothing cuts through that kind of denial and I wind up feeling worse. I don't want to compromise myself anymore. I have to remind myself over and over that I'm ok and more than pain or illness, while legitimizing it as someone invalidates it--and I realize it is not intentional on his part. Completely insensitive. Crazy making. But not intentional. I picked a very lousy time to break down!

Sep 13, 2015 11:00 AM

Marsemouse you aRe not alone when it comes to living with someone who doesn't understand your limitations! I cook, clean, do laundry and homeschool an adhd 6 year old that's unmedicated on top of caring for what we believe is a special needs 2 year old. It's so frustrating because he expects me to get up at 4 am make his breakfast and lunch which adds 2 more meals on to the 4 minimum I cook for my children including snacks. He then expects a spotless house and if it's not I'm just a slob. Our rental has no doors throughout the entire house so my kids have free roam and I like most fibro patients suffer from fatigue among other things so I feel as though I'm a failure that will never be good enough and I'm called a slob even though before fibro and losing our son during labor I was a lot stronger and could do a lot more I can't satisfy him and he likes to say his knee he understands my pain but it doesn't stop hI'm from working. I personally feel what I do Is a job but if I can't finish it all other than the basics I'm not fulfilling my duties. I hope your situation gets better.

Sep 13, 2015 11:47 AM

marsemouse - you say it like you had some choice in the matter to breakdown. There is never a good time for it and what your going through and dealing with is not your fault!

It breaks my heart and makes me angry that neither of you get the support you need at home. I hope that changes for you at some point..that kind of stress is not healthy anyone!

Sep 13, 2015 12:00 PM

Daniel - i absolutely understand your feelings on not wanting to be made to feel like your nothing more than your pain. I have this problem where when I am hurting it shows.. i can't seem to hide it no matter how hard I try so I was constantly asked by ppl (mostly at work) if I was ok.. how I was feeling.. whats wrong with you... i used to explain and thought about the same way you did. I got tired of it too and I don't talk about it with anyone anymore at work. Ppl still ask and I just say I'm fine or I'm ok. I just don't have the mental energy to ppl who will never really understand anyway ....most of my family doesn't bring it up unless I do.. i used to get mad about it but now I'm grateful for it lol I've learned my disease is something I mostly need to deal with in my own way.

Sep 13, 2015 12:31 PM

Linda, I totally appreciate your post and I can totally understand where you are coming from. I get that a lot from people at church most Sundays. I am also one that if I'm hurting it does show, no matter how much I do to not let it show. Now, I just say I'm fine or hanging in there. I rarely discuss it anymore except on a need to know basis.

Sep 13, 2015 4:42 PM

Chelsea I'm so sorry-I hurt for you, reading your post. My ex made me feel defective and horrible --he said I was "complacent" when I had to stop working during radiation treatment after surgery! I wish you could get more support and help, I wound up leaving but I was essentially resented out of the marriage and he was an abusive jerk anyway, just hid it in public and was a high functioning alcoholic (how could I have missed that?!). Thank you for writing because when I see it from you my heart breaks. I wish you didn't have to endure the humiliation, just do any little thing you can to take care of yourself. {{{Chelsea}}} I hope you keep posting--we can all help each other!

Sep 13, 2015 4:50 PM

Linda thank you! It's just that I've always always always been able to do something to push through. I've simply reached critical mass. I can't hold myself up in the shower!! It's the worst possible time because I'm so stressed living here, but it follows a long struggle that just whipped me. I have to accept it because hating myself doesn't help in any way. I feel like I'm in a nightmare and can't wake up, or like my worst fear of having Locked In Syndrome where I can sense and comprehend everything but no one else can see me or knows I'm there, or thinks I can. Thank you for your kindness and reminding me it's not my fault. There is still so much victim shaming I take it on so no one else has to! Thanks for starting the thread Daniel.

Sep 13, 2015 5:51 PM

My father sees me lying on the bed, day after day, week after month. Struggling to eat, seeing no friends (ever! Very oppressive environment) unable to do much of anything. He runs five days a week (did I say that ninety times?) He was in big denial when my mom died, I understand it of course but there is danger in denial. They were my parents and both in the health profession so I assumed they would take proper action. By the time I told my father to get her to a hospital it was too late. His response when I tried? "It's Sunday, I'm not going to take her to the hospital on a Sunday." I am not saying he wanted her to be sick and die--just addressing the horrible denial so it doesn't kill me too. And the judgment, sigh, tacit or otherwise. I am *always aware that I am a grown woman who should be living with my own family, every humiliating time I walk out of this room. I told him--only because he walked in on me crying one day--that I am suicidally depressed. That was about a year ago. I sought therapy, I don't expect him to know what to do or be able to help but to completely deny it is just...weird. He asked if I wanted to go overseas for Xmas (sorry if I'm repeating, lupus head). He's visiting my brother. My brother...well, just No, Not Good For Me. He KNOWS this after a lifetime. At what point does it become completely disrespectful, even verging on abusive? To ask me he has to deny my entire reality on so many levels; that I am in constant pain, exhausted beyond repair from auto immune flares, slave to medications and doctors, trying to recover any life after divorce and now this grrrrr blue cross anthem thing which has me ready to chew my own arm off--not to mention he knows very well my brother is not so nice to me. He refuses to admit that part even when he pretends to acknowledge it. Plus, I know he thinks it's a nice offer. I'm trying to behave, it's not his fault :( if I flew a banner in front of him and broadcast it in hi def he would say, uh huh I understand...and then ask if I want maybe to go mountain climbing, have some Cuban food after. Sorry for more repeat--I finally said I don't know how you are able to look at me or this (my pig pen room) and make anything about it ok, because it's really not okay. I am not okay. I said "I'm sick dad, I'm miserable, I'm lonely." I hated saying that to my father, hated it. But it turns into another round of Lucy holding the football for Charlie Brown. It doesn't mean anything. He started to walk closer and I held my hand up: no, you're going to make me humiliate myself, I said. And that's what would have happened--I'd've tried to explain Chronic Pain/Illness for the 99thousandth time, he'd act like he cared but nothing would shift. I think he weirdly understood that, although if he really did I'd hope he'd be sorry (?) At this point I figure if he really was aware he'd probably be overwhelmed with guilt and I wouldn't want that, but I'm also seeing maybe he'd never even get to that part. This is due to his upbringing, I do not blame him but that doesn't mean I don't feel terrible abandonment and anger. I just know not to engage about any of that with him. I already feel guilty, for not having the family and profession I thought I would, for not being able to take him out with my family and go home at night back to my own house :( I don't want to feel any more guilty when he leaves the planet. That's why I also say it's unfortunate timing to break down. He is very old--but in truly remarkable health. He continues to respond to me like I am not sick and not in pain, and it makes me feel crazy inside. How to be more than pain and still advocate where I'm all emotionally wounded, what a mess!! Thanks for letting me get that off my chest, I was just able to be much nicer to him than this morning when he asked me to brunch with my brother ;) Oh that's the other thing, isn't it? Sometimes I can do things. How do I explain that? Why should I have to? Sorry for rambling!! 💕

Sep 13, 2015 11:50 PM

I tend to keep a small knit group of people. They will ask me how I am and I have developed a pain language with them. If I feel good.. I will say so. If its a normal pain day.. I will say "meh". If I am hurting but still able to do some things I will say "blah" and if I am having a really bad day I say "Im gonna take a nap." If I choose to elaborate on it, I can but don't have too.. they know what I means.

Sep 17, 2015 1:26 AM

Daniel, I completely understand where you're coming from. I've been dealing with chronic pain for over 14 years now and it's very difficult to get people to stop asking, especially parents. Like you I received comments saying they're asking because they care and I've had to have the same conversation multiple times explaining that I do not want to have to talk about and focus on my pain anymore than I already do. I had to explain that they know I'm in pain and unless I bring it up I need them to respect what I need from them. Most folks in my life get it and respect what I have to do for myself. My mother is my biggest hurdle and I've gotten to the point where I've had to give her an ultimatum that she can either respect my needs or we don't have to communicate at all.

My point is you need to do everything in your power to gain control over your life. Keep doing what you're doing. Take care of yourself!

Jul 22, 2016 10:22 PM

This hits home for me too. I really get tired of talking about my pain to people who really have no clue but yet want to give advice on how i should take better care of myself...really?!? Or sell their new potion that will heal me but haven't spoken to me in years. That's an agenda that is just a tiny bit obvious. Lol.

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