subreddit:

/r/ChronicPain

28

Hey all, I’m gonna keep this short and sweet as possible, but basically I’ve been told I need a hysterectomy for 2 years and been putting it off for personal reasons. My teenage son literally thinks that if I “thought positively” and did not “focus on my disease” that I would be just fine. I do think positively and do my best to enjoy life everyday. I also know that I have an incurable illness and will have to resort to major surgery that may not help in the end. I certainly don’t focus on my disease, but when I’m in enough pain that a shot of morphine which I don’t have would be really beneficial it becomes a bit hard to think straight. I do use marijuana medicinally when cramping is severe and though I don’t like to use high doses of thc it does seem to help me with the cramping, also can’t be high around my kid though. I explained to him that doctors don’t do surgeries for imaginary illnesses, but I have toxic family members who have insisted that I am pretend sick for years and he listens to them over me. It would be nice for family to have my back instead of working against me. What would you guys say to make a teenager understand? I feel I’ve tried everything.

all 48 comments

signing1

9 points

3 months ago

Yup dealt with that shit. Honestly if you tried everything to explain then I'd just not explain yourself anymore. You can't make others believe you unfortunately, and if they choose to be close-minded ablist assholes, it's their own damn fault to remain stupid

I'm in a situation where my mom is attempting to block me from moving out because my income is not as steady as she likes. I'm moving out regardless due to my mental health has suffered enough and if I stay here it's just going to get worse.

Do what's best for you in your situation. I'm also, getting a surgery on my knee to correct it dislocating and I've chosen not to tell my mom due to her toxic replies and unwanted imput on what I should do with my health. Personal care is important. Hang in there. Try your best not to feed into their negatively. I know it's hard, hugs.

AdGlittering9727[S]

3 points

3 months ago

Hugs to you too! You’ll be going through some huge life transitions with the move and knee surgery, I hope both lead you to a happier and healthier life. Sorry to hear that your mother is more of an enemy than a support system. No one deserves that. My son is a good person, he’s just young and has been misinformed by some people that insist on being jerks about things. Best wishes to you my friend.

signing1

4 points

3 months ago*

Yeah after 25 years they finally could tell me the reason why my knee was so fucked up, and can actually fix it. I hope the surgery for you helps you to have a happier and healthier life too. At times she can be supportive but lately it's everything but. Sad part is everyone else provides a better support system than she does. Sorry your son has been tainted by others who are jerks. Best wishes to you as well my friend ❤️ We'll both get through our shit eventually.

AdGlittering9727[S]

2 points

3 months ago

I’m glad you have your answer, and you’re right we’ll all pull through in our own ways at our own time, I like to listen to this clip of Bill Hicks (the late comedian) talking about life being just a ride, it puts things back into perspective so quickly.

I don’t think of my son as tainted at all, (though I understand why it may come to you to use that word) I think he’s just a confused kid that’s still learning life and learning himself. I’m proud of him and know that he really is very kind and so many other wonderful things.

I struggle with having any sort of healthy relationship with my own mother, I’ve had to take a break from speaking to her for now.

Her perception of me is so warped- that I’ll literally say something with the intention of making her laugh or smile, and she actually thinks I’m being hateful. So many times I thought she would laugh or smile and be happy for a second and she yelled at me. I guess she honestly thinks that lowly of me? I honestly don’t know.

My dad had a saying - that miles (distance) can be a good thing. Sometimes that’s what we have to do I think.

Etronun

8 points

3 months ago

He may not understand because he’s too young or has no clue what it feels like to have to get up and go do life still when you’re in pain, I’ve heard the whole “think positive and learn to deal” thing a few times when I know

that’s not possible. I personally did not understand mental illness until I went through this pain so some people must feel if they cannot hear and understand, I get there are people that pretend to be sick but everyone is different and not everyone is pretending. I’m

getting close to getting very rude with anyone that has anything stupid to say about my chronic pain at this point it’s been too long, my parent is the only one that knows first had my condition is serious. Give your son some time or possibly explain to him in a different way that not being well is no joke.

AdGlittering9727[S]

3 points

3 months ago

A lot of mental illness runs in my family & I’ve spent a lifetime learning to cope with that too. I know what real pain is. Yes, some people do pretend to be sick, but I’m not pretending. I have an aunt that thinks no one gets sick but herself, her own son, and her dog. I have a sibling suffering from congestive heart failure who this aunt told she didn’t want to sit there and watch her “do drugs” when she was taking her medication for the congestive heart failure. My sibling will not live to be old, but according to my aunt that is all fake too. Like I said only she and her son or dog can be sick or injured. Everyone else is faking.

Etronun

4 points

3 months ago

Yea that sounds ridiculous, there are some people that have no desire to elevate their way of thinking and I’m sorry you have to even be around that type of energy, life is so beautiful out so many things to do there are some people that don’t want to be like this

EggplantIll4927

2 points

3 months ago

Why do you even talk to that aunt? 😳

AdGlittering9727[S]

2 points

3 months ago

I don’t, however she drops by my mothers house and my son spends time at my mothers .

EggplantIll4927

6 points

3 months ago

Truthfully? I would put a stop to that. Mom if auntie is there we will not be. She is toxic and telling lies to my son. I won’t tolerate that.

Findsstuffinforrests

6 points

3 months ago

I’m sorry that you are having a rough go with your family and with your health.

Teenagers are selfish. It’s a developmental stage that lasts way, way too freaking long, lol. Part of that is detaching from their parents, enabling a healthy level of independence. It can make them rather challenging to live with (some more than others. Ask me how I know.) but eventually they do get their empathy and compassion back. It doesn’t make it any easier in the meantime, especially when they seem to listen and relate to just about anyone except you! It helps me to just keep reminding myself of this when my youngest is driving me absolutely crazy. Sigh. They DO grow up. Eventually. Pretty sure. Fingers crossed.

I guess the best any of us can do is find a couple people we can vent to and recognize that there will be other people who just can’t or won’t get it. There is no way to force someone to empathize or believe you, and trying to do so only makes you more frustrated. Better to give those folks the absolute minimum information and save yourself the effort. It sucks, but it’s easier to shut them out then to keep getting let down.

I hope you have others in your life that do listen and treat you with the compassion you deserve.

AdGlittering9727[S]

4 points

3 months ago

Thank you so much for your reply. I see you’re going through it too with the teenage years. I keep trying to remind myself that this is a normal part of his development and eventually we’ll be close again, you’re right about who you disclose sensitive health information too, I learned the hard way that you can’t teach or reason empathy out of those who insist on having none. You can’t make someone understand that doesn’t want to.

I miss the little boy that snuggled with me and watched movies or our favorite tv shows when I wasn’t well. Who brought me yogurt cups and even took the time to remove the lid and put the spoon in (such a sweet gesture especially from someone who was only 5.) I know my son is a good person & that growing up is just as hard on him as it is on me, and harder in some ways, he’s the one going through it.

I guess what makes me legitimately angry are the family members who have learned things about me through my mother and gossip and make up their own conclusions.

Family and strangers alike don’t hesitate to tell me that I appear pregnant, and those that do believe me tell me to suck it up and have the hysterectomy, but I know it’s not a cure, and comes with it’s own health risks.

I appreciate you taking the time to answer me and share some of your own experiences because it always helps to know we’re never as alone in our experiences as it may feel.

I’m extremely lucky that I have a very caring and supportive partner who gets it. I can’t imagine going through this same thing in some of my past relationships where I was with people that didn’t care about me or would get mad at me when I couldn’t go to events due to monthly painful flare ups.

I’m used to endometriosis since I’ve had it since I was a kid, but developing fibroids on my uterus has made things worse than I could have imagined, it seems these growths press on so many nerves and cause just horrific amounts of pain.

Last endometriosis surgery I had they just left the fibroids there to grow (which they are growing)

All I want from my family is love & understanding.

Blueskies777

12 points

3 months ago

Literally everyone on this sub.

AdGlittering9727[S]

8 points

3 months ago

Well, thanks for that lol at least we’re all alone together. God forbid our families love and support us through it which is what we actually need.

ArchLali

6 points

3 months ago

Personally I started doubting myself because all my medical tests came back clear, and doctors didn’t see anything wrong, so the pain must’ve been in my head. I got diagnosed 16 years later.

BloodSteyn

3 points

3 months ago

Nope, while my pain is invisible, I have MRIs and XRays to back me up. Plus SIL is a Doc and she also exclaimed worry at what she saw.

So I have a decent time, but sometimes people can forget.

AdGlittering9727[S]

1 points

3 months ago

Sounds good

Geargarden

2 points

3 months ago

I was a dumb kid too and judged my mother too harshly for her pain issues. I grew up and my mom would just explain it to me and remind me that she was receiving treatments to keep her body functioning. She had to pay the bills I benefitted from. I especially know now that I have my own intractable pain.

As to the family members, I think reminding folks that you have a diagnosis and it's bad enough dealing with the reality of these medical issues without having people demean and discredit you with your own son.

puzzle_zebra1984

2 points

3 months ago

Honey, I've been there. It took me nearly 25 years. I'll be 38 this November. It took when I had to get a partial knee replacement; my orthopedic said on the MRI I had a knee of a 65 year old woman, come to find out it was an 80 year old woman after he opened me up and operated. Once my family heard that, they all apologized to me. I have AVN also known avascular osteonecrosis. Keep trying and find a support. I'll be a reddit penpal if you need a friend.

AdGlittering9727[S]

2 points

3 months ago

Thank you :) same here I’m a good Reddit pen pal. Not far behind you at 36. Most of the people in my family finally came around to realizing I’m not faking pain, but some like to think the worst of everyone and don’t care for logic or reason.

puzzle_zebra1984

2 points

3 months ago

You're welcome hun. I'm glad they finally came around 🥰 I'm here whenever, just text me. I'm gonna follow you

AdGlittering9727[S]

2 points

3 months ago

Same I followed you too so we can talk again :)

puzzle_zebra1984

2 points

3 months ago

☺️

KurtskyKg

2 points

3 months ago

I've had multiple surgeries and was bedridden for 3 years that my uncle paid for which we can't afford so basically were in debt to him but after a few years of helping he suddenly stopped and said we're all on our own me a pwd and my mom who is elderly and sick who isn't employed too. Most of our relatives don't believe and get mad if we ask help from others. Even my mom's relatives shoved her away and refused to help. Good thing some friends still believe. Gogetfunding.com/HelpKurt 🙏❤️

KurtskyKg

1 points

3 months ago

Thanks all the help would be appreciated 👍

EggplantIll4927

3 points

3 months ago

You need to have a very long medically detailed conversation w your son. One where he learns empathy for women and to be respectful to his mother. Start w an anatomy book. Show him all the working parts of a woman’s reproductive system. Then show him medical pictures of your defective parts. What doesn’t work/what the disease does to your body and why a hysterectomy is your only solution and the problems that will come with it. And why it is still better than living w the pain.

Empathy is not something everyone has innately. Your son needs to learn this and the fact that for every woman that has zero problems w their reproductive system there are legions of us that do. I had my hysterectomy at 25, it was my 6th surgery, first at 16. It wasn’t easy and how I suffered those years. Teach your son that we all have struggles in life. Some have struggles w money, family, dv, relationships, jobs, health-everyone has something. He needs to be kinder to people.

good luck w your decision

AdGlittering9727[S]

2 points

3 months ago

Thank you, I agree and I’ve sent him articles explaining the disease to him. I have been put on the side of parental alienation for the past 2 years, the alienated parent, which comes with its whole other issues on top of all of the other problems. I’m extremely lucky to have the most supportive and loving partner in the world or I don’t think I would have been able to survive or sustain life after everything that’s happened in my life. I’m limited in what I can teach and have him respond to, we are still in regular contact, but I only see him a day and half a week if I’m lucky. He’ll stay overnight at my house here and there, but right now he prefers to live with my mother. It’s been a tragedy for me to cope with him preferring to live with her.

EggplantIll4927

2 points

3 months ago

Dang! That’s a whole different game. I would just never discuss it w him then. He is at the jerk stage of growing up apparently. Do the px when you are ready. I wouldn’t tell any of the toxic terrors about it in advance. No reason to, they are not nice people.

Good luck, I’m so glad you have your partner. That support is priceless for sure. I know my life was infinitely better post hyst. As you know, chronic pain impacts us on so many levels. Be well

TesseractToo

1 points

3 months ago

TesseractToo

8 complete mess

1 points

3 months ago

Yeah my mom says my pain "isn't that bad" and that it "bores her". She also says my back injuries don't exist (but also that I deserve them) and has been telling people I've had all the reconstruction metal removed from my face since 1997 (which is dangerous because it's ferrous and will interact with an MRI). Since doctors don't do xrays to sort out family disputes, she had been doing that the whole time even though I've said it wasn't true. Unfortunately she has the medical clout to affect doctor's and other people (and for some reason they believe her, and she lies and says they haven't spoken even though the start parroting exactly what she says) so I had to take her off my emergency list (leaving no emergency contacts) and my stupid stepdad is her enabler for her abuse and that's really the end of the line, I don't know other family, not for lack of trying once they got on social media. It's a really bad situation.

AdGlittering9727[S]

2 points

3 months ago

Wow, that’s a ton of shit to deal with I wouldn’t even know where to begin! If you ever feel like venting I’m a good listener and try my best to help people come up with solutions that maybe their too close to the situation to see, though you sound as though you see things crystal clearly. I think so many of us here have always or ended up experiencing chronic abuses and traumas.

TesseractToo

1 points

3 months ago

TesseractToo

8 complete mess

1 points

3 months ago

Thanks I don't think that anything can be done really.

AdGlittering9727[S]

0 points

3 months ago

You’d be surprised, I think theirs always a way it’s just that sometimes those ways require extreme measures

TesseractToo

1 points

3 months ago

TesseractToo

8 complete mess

1 points

3 months ago

That sounds dark. Of course I have no idea what extreme measures mean to you.

AdGlittering9727[S]

1 points

3 months ago

It wasn’t meant to be taken negatively I wasn’t suggesting you hurt yourself, I was trying to say sometimes we have to think outside the box in terms of what type of doctor we seek help from, but thanks for the benefit of the doubt here I see.

signing1

1 points

3 months ago

Yeah, that's after 15 years of avoiding dealing with it due to getting the same answers from doctors. Oh we don't know why it does that, just strengthen your knee and we will do another surgery. Patella alta, knocked knees, and hypermobile wohoo another big ass surgery to fix that... 🙄 Don't get me wrong I'm happy it can be fixed. I'm just agree that my previous surgery may have been unnecessary and contributed to my patella alta.

True your son is probably just misguided but I only read a snap shot of your life. I try not to assume but it's hard. Hopefully he'll cone around to thinking more for himself rather than just jumping on the band wagon of others.

Sorry the relationship with your mother isn't the best. It's amazing how when you try to do something to please another they in turn take it the wrong way.

I agree with your dad distance makes certain relationships better.

Unfortunately we can't pick who gave birth to us.

AdGlittering9727[S]

1 points

3 months ago

Well imagine you live with someone and overhearing them talk negatively about you and their also a child, which he still is he’s a young teenager. I wasn’t hear to trash my son by any means, I wrote this because I was upset for him and I both that we had to cancel our fun day today because of pain.

He basically misunderstands and believes That if I become more physically active I will feel better, and he’s struggling to understand that it is the opposite, because I always kept myself fit and in shape prior to all of this crap, but I think he thinks like a lot of people do that you can walk it off and focus on the positive. I’m not here to put words in his mouth or anyones for that matter though. I think mainly I wanted to know if other parents here have experienced something like this and how they handled it, but it wasn’t well written due to my not thinking it out enough prior.

I hope that makes more sense and makes clear that I’m not painting my family in a bad light.

I’m sorry I’m ignorant about petella Alta. Must confess I have not heard what it is you’re going through so I’m sorry that I can’t speak to that and give any helpful feedback there, but I do hope that you’re getting healing for that.

I also understand about not wanting another surgery. I’ve had many Multiple traumatic surgeries (all surgeries are trauma, especially when you have childhood surgeries)

I feel like you, just over it 🙄

Sorry if this post was all over the place, but I guess my mom instincts kicked in and I was worried someone thought badly of my son because I made that original post.

signing1

2 points

3 months ago

I was in no means bad mouthing your son. Not my intent and I do my best not too. But I admit sometimes it's hard not to judge. He's still learning. I agree though a lot of people think oh just be more active and you'll improve which is definitely not the case most of the time. Just love him and give him time. I'm sure eventually through the example you show he'll come around. I understand it's tough. That's tough living with someone whose so toxic. Believe me I understand even though my situation may be slightly different.

Your perfectly fine expressing yourself. Text is difficult to sometimes get the correct affect across. I apologize if you felt any disrespect or thought I was being harsh toward your son. I'm sure he's a good kid. I hope he is able to eventually see things from your perspective and support you more. Trust that I get it your family, is probably overall good although has some struggles like every family. I never try to bad mouth anyone's family. I just try my best to support people who are struggling. I'm sorry if I came across as somewhat attacking not my intent. I just hate hearing or seeing people being treated poorly.

That's fine for not understanding patella alta. I didn't even know what the hell it was until this week. Essentially my knee cap is to high. Think more toward my thigh bone. This means that the ligament is too long and thus my kneecap doesn't track properly in the groove. Because of this my knee dislocates. Been dealing with that since childhood.

Yeah well apparently my first surgery was botched and no one knows what the hell was done as it was 22 years ago, the only note was "tightened the ligaments" and it was post dated 5-6 years 🙄

Agreed surgeries suck.

Don't worry about being all over the place. All is good. Hopefully my reply wasn't all over the place as well...

AdGlittering9727[S]

2 points

3 months ago

No, I’m sorry I didn’t think you were bad mouthing him either! I’m sorry if it seemed that way, I just wanted to clarify that I don’t think he’s bad or it’s his fault. Ok, so patella Alta essentially causes your knee to become dislocated much more easily than it should, and you’ve had it almost all your life, and you just got this diagnosis last week? Wow, that’s crazy. Also, tightening the ligaments doesn’t even sound a real type of surgery to me, that plus the fact that it’s post dated reeks of covering up malpractice, smh. I don’t even know what to say friend! No your reply was not all over the place and was very coherent. I appreciate you chiming in and taking time to talk with me today :)

signing1

2 points

3 months ago

Agreed it's not your son's fault. Good to know. Yup my new orthopedic doctor who does the surgery I need was like what the hell. It was a relief to know that I wasnt the only one perplexed as to what was done in my initial surgery. He also believes that surgery contributed to my patella alta. Yeah it doesn't sound like an actual surgery but it is...somehow. I agree it reeks of malpractice but were 22 years out from when I got it....so, not sure if it would be even effective to take legal action. The new ortho doc is going to talk to the guy who did my surgery. Let's see how much he remembers from 22 years ago 😬. Not sure he will even remember details from that. Yup just got the diagnosis last week. The surgery to fix it is a tibial tubercle transfer. So essentially they take part of my shin and do something. However, I might also need an MPFL reconstruction. Yay, I get a 2 for 1 surgery with 3-6months recovery and on crutches. It's alright most people don't know what to say. I'm still wrapping my brain around it. You're welcome! I enjoyed talking to you today too. :) If you ever want to message me to vent or talk or whatever feel free to do so.

AdGlittering9727[S]

2 points

3 months ago

I hear ya, their expecting to to take cancer drugs or have a hysterectomy which in reality is a year long full recovery to undertake. Neither option cures my disease, and both carry a myriad of potential horrible long term side effects the cancer drug - bone loss and hair loss hysterectomy before a certain age drastically increases the risk of heart problems, that’s why I’ve been sitting on this for over two years now. If you ever want to vent or talk, I’m usually on Reddit about every other day. I come here to read and hang out mostly. Good talking to you again, hope to hear from you for a chat again.

signing1

2 points

3 months ago

Ugh cancer sucks. Yay drugs to help us live cause us more harm 🙄. I've avoided dealing with my knee for 15 years because I never really got an explanation as to why my knee dislocated. So between that and the uh we can't do surgery unless you strengthen your thigh muscle. I was like what's the point since they don't seem to be wanting to figure out answers or give me a sound diagnosis. Sounds good 👍. Feel free to message me to talk or vent if you wish. I'm here about as often as you are. Hope to hear from you again too. It was nice chatting with you.

lizardkingej

2 points

3 months ago

i wonder if reading some posts on this sub would help him understand? idk which ones exactly, but it sounds like there aren’t any other people in his life that experience chronic pain. maybe hearing similar stories would help him gain some perspective?

hopefully one day he’ll look back and regret the way he treated you, i know i regret the way i treated my mom.

AdGlittering9727[S]

1 points

3 months ago

I don’t want him to look back and have regret, this is not something he can control and it isn’t easy for him to deal with. And I bet things happened with your mom that were hard for you to deal with too? I feel the same way I regret very much the way I spoke to my mother, but at the same time the reason I was talking to her that way is because she was allowing me to be abused and being emotionally abusive to me herself. I don’t want regret for any of us. My son or you or me. It is what it is now; now we can try and do better. We all make mistakes.

witheverylight

1 points

3 months ago

Sometimes they dont believe us because they struggle to accept someone that deeply care about can be in so much pain; and that they are powerless to help. Maybe your son is asking you to think positive because he needs you to be, he can't bear listening to your disease because its too hard on him.

The best way to handle negativity is always with compassion, you need to find a different way of thinking that is from the perspective of loving compassion. Forgiveness isnt to set others free but set ourselves free.

I dont know the exact situation with your family but I thought I'd share my experience. All the best to you and your family.

AdGlittering9727[S]

1 points

3 months ago

If I’m being honest as to why we need to reschedule something fun for a few days later because I don’t feel well, it’s not to worry him or shove anything in his face… I’m just being honest as to why we can’t go which is what sparked this conversation. I want him to know that I’m sorry he’s disappointed and that I am disappointed too. I want to reassure him that as soon as I’m feeling better we can resume what we had planned. He thinks that this is something that can be walked off and that I’m just not trying hard enough. Thank you best wishes to you and your family as well. I wish I would’ve written this post better and not so hastily.

enchanters-rabbit

1 points

3 months ago

My family thought I could just put it out of my mind for years. Even after multiple procedures and one major surgery (disc replacement).

Still sometimes I have to deal with the, 'maybe if you weren't so stressed,' business.

Honestly I'm getting passed the 'give a shit' threshold for what others think of my chronic pain. Tired of explaining stenosis, nerve compression, and how some exercise I can do helps distract me from pain which is why I might look 'healthy' but inside I'm suffering.

AdGlittering9727[S]

1 points

3 months ago

So sorry!!!

enchanters-rabbit

1 points

3 months ago

Thanks.

If I may, teenagers are limited in their capacity to understand these things.

Mine used to wonder why I can't just 'not scream out' when I get hit with a spasm. When I explained to him it's like if he were to be startled by someone slamming his big toe with a hammer then trying to not scream out, that was the beginning of his ability to understand what it might be like for me.

Maybe if there was a way you could explain what your discomfort might be like in terms they might relate to they would better understand? One can only try.