Judgmental Family Members

ive been pretty lucky in that regard it seems if you have massive scars like I do then you must be in pain .

my kids where bought with me the way I am so there non judgmental and have seen me go thru some of the bad operations . have had a few friends over the yrs comment about some of the meds im on but nowdays I find it easier just not to tell people and just say I deal with the pain the best way I can and leave it at that .
it's pointless trying to reason with people like that they have already made up there minds I had a long time friend who made the odd snide comment about my back and it could not be possibly that sore for so long till he fell off a ladder and almost lives on the same meds as myself . . even dr's cant have a true understanding of what its like nobody can till they go thru it themselves .

cheers dean

Important thread/subject, thanks for starting it. Until your poll is more "filled" out, not sure if my situation is the minority or the majority. Time will tell.

I am fortunate that I have no judgmental family members. Zero. This includes my almost 87 year old mother, my wife, my children, even my brothers/sister (of whom we have little if any relationship with each other). While some of them have made no effort to assist me, and some are in denial with my situation - haven't had any bad attitude from any.

When I do read stories here at HW CP ,where members are being slammed by love ones and family members, it truly breaks my heart. It's bad enough dealing with what we deal with, and then have close family members turn on you like a snake because of your misfortunes.

If I were to be treated that way by a family member or close friend, I know how I would react - I would turn that person off in my mind, literally, and I would never had anything to do with them again, but hey, that's just how I am. You can't please everybody all of the time. In my little world, I believe that real/true friends never turn against real/true friends.

A certain "good book" says something like, "out of the mouth, proceeds the heart". Often people that make those kinds of hurting remarks, are only saying what they are really thinking inside. It's best to know where people really stand, in my opinion.

david

Powerful thread and poignant posts. Glad it's been started. I learned the hard way, maybe out of desperation. I do not have one single family member or friend who understands, shows compassion, and isn't negatively judgmental. Hubby is one, THE one, actually that comes closest. He's exceptionally good at understanding and noticing when I'm severe pain, understands when I can't perform certain things, and he's seen me in extreme pain. When I got these last three surgeries within a year and a half, two things happened. One was that the first one took away such a huge chunk of pain, he felt like a "side effect" was it also removed what he refers to as built up poisons in my system, and I "came back to him" and not just a miserable, frumpy, grouchy, antagonistic slug on the couch who didn't go to bed with him but preferred the couch every night because of my pain (then, he didn't understand). Can blame him watching me deteriorate.

So ever since that first surgery he's been better and better, the best thing I've got.

Except, he doesn't get the meds. I mean, this man at 41 has no cavities, never takes an aspirin, and has never taken a sick day. It's kind of freaky. He gets better looking as he gets older, I just get more surgical scars and wrinkles and gimp more.

Every family member and friend, (and my Sister in Law works in Pain Clinic, which I'll never go to, for no other reason than that I'll never mix family and business). She's shocked at my medication list and surgeries and therapies. She had a microdiscectomy a year ago and was in agony for 8 months and that was the closest she came to understanding but there really is no comparing.

I'm rather estranged from my Mother, we speak only once or twice and that's when I've had surgery. She always, without delay, the first question is: "What are you taking for pain meds?" Not "how are you feeling after having our spine drilled into and cages put in and bone taken from your pelvis and marrow for transplant,....?" Nope, guess that just doesn't register.

My Maternal side of the family I have very little to do with because their bluntness is hurtful and full of judgment about my health, interspersed with disbelief.

I consider my In Laws the closest thing to my real family, and while I love them dearly and they are supportive and good to me, extremely so, and I have a great relationship with them, I learned to never, ever, ever bring up any medication (unless it's for HBP or if I'm feeling bold, I may mention I took 10mg of Flexoril once that week). But, God forgive me, I've learned to lie.

Other than here, no one "really" wants to know how you're "really" doing. They want to just hear you're doing fine, and spend 95% of the time discussing the children and grandchildren and school.

My Mother in Law would be my closest friend because she has numerous health issues, dangerous ones, but as it runs in the blood, discussion or mention of any pain management beyond ibuprofen is looked at and regarded as powerful medication only taken by drug addicts.

I don't tell people, it's not their business. With my move I'm taking my lessons, my health is private. I just think we should all have someone close to us who doesn't judge us and cares enough, that if something were to happen,.....we'd have someone there. But I do not want people knowing.

After the bout with my therapist last week, the cloud lifted and I realize even that is not a safe place to unload my pain and frustration. When she scribbles notes if I mention frustration or pain after PT needing more than a regular Tylenol, I realize....this move to a new therapist may be the best thing for me.

I don't disclose. I lie. I downplay. All to shut them up and avoid the lectures they still have the energy to dispense to me after 20 years.

Husband's the ONE person in my life I tell everything to, I trust, he'll tell me how to watch and use care how I word things, he is totally on my side. He doesn't "approve" of narcotic pain meds, but now he understands a little bit more (than he did even 5 years ago). But to answer,....no one. I want friends to have fun with and chat and do things with,...not people to lecture me on how I'm as low as one of those drug addict heroine shooting gutter rats. (Not my words, believe me,....I am in control of cognitive dissonance and can have empathy for both sides of situations, even those many people find distasteful).

David,

I would love to have you talk with her but she is very two faced. It took my husband years to see it and believe it. What really cemented it was this last new years at the beach house when my mom was going off on me for not eating the fried fish plaster she had ordered for us to eat. My husband looked at her and said you do know she is allergic to fish right? My mom spit back with no she's not... she just wants to disrespect me by not eating what we got her. My husband then said we are going to take a walk and he then asked if this is how it was growing up(we ended up waking 3 miles to McDonald's for dinner talking about this) the next night I discovered my Percocet was missing and I asked about it mom had flushed them down the toilet because they are addictive and I don't need them. It's a 10 hour drive from home to there and then I got there she could see i couldn't manage the steps by myself. Then after getting my mri results I had her on speaker phone to read the results trying to prove to her I am seriously injured) when she asked how an almost 22 year old could have these kind of injuries. I am 24 almost 25. My husband face was priceless. I asked her if she was serious and that I was 24. She wasn't joking and argued with me over my age. Sadly I do not think anything anyone says or does will make an impression. She always viewed me as a hypochondriac and I do these things for attention. I love my mother because she is my mother but I do not like her very much. It's difficult seeing my sister get anything she wants and every little thing wrong with her gets addressed right away. When my sister was diagnosed with lactose intolerance every milk product was switched to lactose free. But me with a true blue swell up hives difficulty breathing allergy can't be recalled and I go hungry on the nights they decide to eat fish. While they (mom dad and sister) chew me out for not eating and argue with me over my own diagnosed allergies.
Great family huh?
I have so many more horror stories like these too. I have brought them up to her but I am just being melodramatic, overreacting and I need to just get over it.
It's difficult dealing with all of this and trying to feel okay with my life even without chronic pain.

Morgan

P.s. [edit] it's been a blessing to come here and be able to talk, vent, share and feel supported. Thank you all so very much

I found it to be much better that the least my health issues are discussed the better. It really is no ones business. It may sound strange coming from a CP patient, but I am not comfortable discussing my health issues with anyone except my drs. I also do not think I should have to explain myself to anyone either. My drs understand, the average person does not. I think sometimes family & friends have too high of expectations.

I think for the people new to chronic pain they may assume family & friends will understand. However,they will soon learn that is far from the truth. Friends find out you have pain pills & suddenly they think you are the local pharmacist, lol. Then you have to explain why you cannot give them any of our pain pills or muscle relaxers. If someone tries to get me to discuss what is going on health wise I just tell them there are better things to talk about and drop the subject.

I hope you can get everyone off your back so to speak......Susie

Kathy,

I made the same promise to myself. I don't want to be like her. I want my daughter to grow up happy healthy and wise. I don't want her feeling like she is worthless and feeling that she is going crazy because no one believes her. We are better people then our parents.

Morgan

I wish we all could get together and have a BBQ. It would be nice to be around people who we are kindred spirits with. Laughing, joking, teasing, compassionate, understanding, loving and so much more. All of us together eating a bunch of delicious yummy food stuffs and not judging each other because we can't get up and play the volleyball game or go out and play touch football.
Pity we are so spread out I know I could use a support group who knows what we all are going through.

Morgan - I truly feel sorry for you with that situation with your mother. From your fuller post in reply to me, I can see it would be pointless to attempt to talk to her. I don't understand how she could be so openly cruel to you, and for what purpose other than to continue to hurt you and distance herself from you. Trust me, my mother and I have always had a distant relationship, up until the time I started to become a cancer magnet. I don't think it had ever occurred to her, that one of her own children might end up being seriously ill like me and possibly die way before her. She treats my older brother in CO with contempt for his illnesses, and believes that are all in his head. So I lucked out on my end, since I am the only one that lives close to her.
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The getting together part isn't as much a fantasy as you all might think. At the prostate cancer group, for 5 years now, they have two get togethers, twice a year. One in the fall in NY, and one in LA in the spring, they call them GFMPH meets. "Good for Men's Prostate Health". They started out as a simple thing with perhaps 9 people showing up for the first one. The next one in September, has around 50 plus people in attendance, and a wedding of one member will even take place at the meet. Both husbands and wives attend.

Would love to see a list of all those that are regular here and see where they live, to see if a possible neutral location could be found, or see if anyone has a spread big enough to have a group meeting. Least it's something to think about, its possible we could do the same thing here at HW CP.

david

Yeah, I'd be up for the meet up. I live in southern AL...but sometimes venture through TN, Carolinas, Pennsylvania, New Jersey, etc.

Possibly will be moving to Iowa down the road...which would put me closer to Chicago and surrounding areas.


Potluck is a great idea.

The scar on my neck is visible to everyone and I have another Fusion surgery coming to fix 3 more discs so when it comes to pain nobody questions me. The migraines are even worse than the neck pain.

My wife thinks I'll get use to the meds and I'll need more or need higher dosages, this hasn't happened in 4 years. Been taking the same meds since 2008.

My parents are in their 70's and give me crap for taking even OTC aspirin. After my neck surgery, in ICU and crying in pain from the surgery they would give me diluadid through my I.V. every 3 hours. My Dad told the nurses not to give me anything. The Doctor's told him straight out- "Sir, you have no right to interfere with our treatment for his pain".

Some people won't ever understand what we go through and I stay away from these people. My parents have come around the past year as they've seen me playing with my kids which I couldn't do years ago. Thanks to the meds I'm able to work without missing days and enjoy my hobby.

Sorry for the new post, but if I edited, added to the above one, I'd be writing one of those novels, as I do, that the Mods prefer be condensed.

It happened again. I called my Mother today to wish her Happy Birthday. Throughout the course of our conversation, she asked her usual questions, and I told her about this forum and how much I've learned. I told her I was surprised to see how many of us CP'ers seem to have similar childhood histories of illnesses, and so many of us have the same stories.

What was the reply? "Oh come on. Not one doctor you saw when you were a child ever mentioned any of that was wrong with you. Really!"

I freakin' give up.

Sookie

EDIT:  Oh buggerall, okay, so I'm going to edit after all.  One more thing to add.  Granted it was HER Birthday call (remember, we're pretty much estranged and a 7 minute call is a very big deal)...the other things she felt important to ask was why wasn't I on disability yet, what's the hold up?  I first filed 2 years ago but this series of, you know, hospital visits and surgeries kind of kept me out of the game plan.  So I hired a firm to help me because frankly I have enough on my plate to deal with, enough appointments, and it's worth it to me to pay someone who specializes in this to help me where obviously, I can't handle it.  So I hear, "why don't you not use them and just go do this yourself?"  (Uhm, sorta tried that and got waylayed, I don't want any speed bumps in this process supposing, God forbid, "I" hit some other health issue!)  And of course, "Now how is this disability going to be handled when you move out of state?"  "How ARE you going to make this move in 2 weeks!?"

Anyone reading this hear anything like, "how ya feeling?"

Post Edited (Sookie Snows) : 8/6/2013 8:38:13 AM (GMT-6)

Thank you David.

You're one of the lucky and fortunate few.

Sookie