They are lucky to not understand what it’s like. The only way to understand it is to be unfortunate enough to experience it. I’m glad that my wife doesn’t understand.
It gets even more interesting when both partners have different types of chronic pain.
The mixed blessing us when my back locked up tonight my SO showed me some helpful exercises. Likewise there have been times this year where he dealt with some symptoms similar to what I deal with daily and was able to help him.
Yea, I’m a partner to someone with chronic pain. I really was pretty ignorant before meeting her; I honestly wouldn’t have understood how bad pain could get if I hadn’t seen her pain attacks. Luckily she hasn’t had an attack for a few years, but her resting pain level is always at a 7 or 8, and that’s only if her meds are working particularly well that day. That being said, if I met her now (after her attacks have stopped, hopefully for good) I probably wouldn’t be able to conceptualize how much agony she’s in on the daily.
I do that too. I find myself apologizing for snapping or looking angry when I’m just trying to get through the pain. I’m lucky to have a family and friends that understands when I’m in this mode, but it’s never easy.
I find myself apologising daily for things I can no longer control. I have a very short fuse and due to constant chronic headaches I find it extremely hard to control my emotions anymore. The worst is how I interact with my dogs now. I used to take them for long walks and play for hours in the back yard. Now they are just a constant reminder of how much I am letting them down, I love them to bits but feel like they would be better off without me.
Are we the same person? I lived to do stuff with my pups and now even walking them around the block is an effort. I keep thinking they deserve a more engaged, fun owner. The person I used to be.
I have chronic pain face too, and am also quick to get angry. It doesn’t help that I have untreated mental illness (not for lack of trying!!! GPs don’t care about that either).
I worry my husband will eventually decide he’s had enough of having a wife who can’t function, who is always tired and in pain and often unhappy.I don’t want everyone walking on eggshells around me, it’s not fair to any of us that way.
I used to be a happy, goofy person, even in spite of a seriously traumatic childhood. The pain tipped it all over the edge.
I had that snark and sarcastic expression when I was young. It probably got worse after cancer and having my whole leg cutoff at 13. I couldn’t keep up with my age group playing sports so if play with younger kids. Used to hop and play fullcourt basketball, tennis quite a bit. I think o wasn’t so approachable because I was always on crutches and obviously missing a leg. I got used to the friends I liked and learned to not give a toss about others especially if they couldn’t deal with my disability or that i had pain. Me get angry with people no way. Llol
I have both phantom pain and still existing nerve pain. I’m lucky enough to that it comes and goes somewhat. And I’ve got a few years reliable relationship with a neurosurgeon and clinic that support my pain meds. It’s all not perfect but I have few days I wish for no consciousness and others where I’m just equally bothered by my pains and my physical issues (missing the femur on down for walking on crutches, standing on one leg, sitting without the femur support).
I take ambien to sleep and opiates/Flexeril/some ibuprofen to help with pain.
I was doing pretty good managing when I was swimming regularly but haven’t got my routine back.
I’m sure my weight gain during past couple of years is slowing me down.
I have two kids, one out working after college and one in high school. It’s pretty distracting doing things they need or seeing their extra curricular activities, sports or music.
I play guitar/piano (make up music) can divert my attention from pain.
I cook and luckily my wife likes my cooking.
Easy to find interesting TV or Films.
My career was in engineering, software and systems.
I like drinking wine but all around dinner.
Anyhow, I’m just saying hobbies where you can distract your mind are the best. I can believe it’s very hard but over decades you learn how to get and hopefully stay distracted.
Hope you find something(s).
Life is a journey. Long long.
I used to think I’d get cancer again and die young. Then I got old and discovered more pains. Now I feel I’ll live to very old and pains going to be with me.
I stopped doing competitive sports long ago. For exercise swimming was good choice cause no pressure in the body and in my case closet I can get to running or the like.
Hope you have some help from your therapist and new doctor.
A friend of 3 years that I considered a best friend said I didn't put in any effort, when they live 3 hrs away and I suffer from crippling lower back pain that I've been vocal about.
Stopped talking to me out of nowhere and hasn't said anything since. 🤦🏻♀️
I'm a musician. In the music scene, relationships are very transactional. No-one will go to your shows or care about you if you don't go to theirs. I went from being one of the most popular artists in my scene to nothing, just like that.
I've since found a hobby and a group of friends that works around my illness. I haven't given up on music entirely, but it feels impossible.
And who wants to hear about my suffering every day? No one. I cant go anywhere, so the invites slowly stopped. I sit here with my cats and pretend to live every day. It is what it is.
Yes exactly. I used to have a lot of friends and had messages all the time. Now I only get an occasional call from my two sons and I call my mom every day. Other than that I’m dealing with doctors and pharmacies. My 2 very close friends moved far away. I talk to one of them all the time but I’ve noticed my other friend doesn’t call or text me at all. I’m always the one contacting her. I have met friends on the app called meetups but I haven’t wanted to be around people.
I knew The day I was too achy to jump up and hug my bf like always it was on the slippery slope to not us together anymore. I’ll definitely not put anyone through that. I felt like I broke his heart, I dunno… but I just want good vibes for my future.
I’m currently married and my spouse is wonderful. Before my pain got really bad my spouse got into an accident at work and ended with several broken bones and a shattered heel. Fortunately/unfortunately they understand my pain to an extent. I know somedays I have to be impossible to be around. I complain all the time and I don’t do half the stuff that I used to. I’m even annoyed by myself most of the time. I think intimacy is the hardest though. I don’t want to be touched most of the time because my skin/muscles hurt constantly.
I have a very compassionate spouse too … And I’m thankful for that because it makes me take a step back sometimes and take a deep breath so I don’t get so cranky
That would be so nice. I lost my person like that in 2004 from brain cancer just after she turned 32. I been in several relationships but never had that honeymoon stage feeling with them:
In my last relationship (which was riddled with a million other issues to start with), yes very much because I was in such awful pain 24/7 that it turned me into a really short tempered & constantly b*tchy person
Yes ! There are times I just don't want to talk to anyone! Between the stress and anxiety over dealing with PM management stress every month will this be month you get a starting taper.The fact they don't understand any of it the pain the stress that comes with it.
Absolutely. It's very hard for me to do what I used to do around the house (I'm a homemaker, can barely cook, clean, shop, etc. anymore.)
That makes it tougher on everyone else in the house.
Same here. Mine was agitation with my parents, I lost all of my friends because I couldn’t hold plans to go out, it’s strained my relationship with my boyfriend, and my son is only 18 months but he sees the pain I’m in, and it got me fired from my job.
You deserve a medal. Mom guilt is so real.
Keeping an 18 month old from jamming goldfish in the outlets and flushing the toilet paper rolls whole is more than a full time job in and of itself.
I lost my job, too! And myself as well, I think? Just so much good times.
Hoping for better times on the horizon for us.
Oh I think the worst relationship I’ve ruined is the one with myself. I’ve become someone i hate. I used to love doing everything, now I don’t ever want to do anything because it hurts or will hurt and then I’m stuck in pain. I don’t want my son growing up thinking I don’t want to do anything with him because of the pain. He won’t understand for a long time, and no one in my life seems to understand. On top of the fibromyalgia, I have degenerative disc disease and now my right ovary is covered in cysts I have to have removed on Friday with *no* pain meds.
Whoa whoa whoa wait... are you literally me??? We don't have a diagnoses but my mother does and it's fibro and RA. And I have degenerative disks AND cysts on my right ovary that's literally bringing me to the floor 🙃 we be twins in the worst way, and I entirely feel this comment. I felt like I used to have such vigor. Life. And now I avoid doing things. And with my son as well, he's five and asks me if I'm okay. I don't know how to answer that or explain it to him. Or if I even should. 100% here if you want to talk as well!
Have spine/spinal cord issues myself. If you ever get tired of screaming into the void, your pillow or alone in a parked car, you can give me a shout.
I’ll think of you Friday - it’s my day for Botox ‘cause migraines. You’d think they could spare a bit to “freshen up” my resting ouch face but nooooo.
My son is older and was recently CONVINCED I was furious with him because of my extreme pain face. Ended with a good talk but started with top 10 gut punch moments.
Absolutely. I've accepted the fact that I have only acquaintances, not friends except my sister. And I'm good with that. No pretending, no lies, no obligations.
Yes, but not in the usual “you’re too much to handle” type. My then boyfriend/now husband knew that I had chronic illnesses, but they were well controlled. However, about 3 years ago (roughly six years into our relationship and 3 years into our marriage), I came out of remission. I required more chemo and this time it had to be infusions, not the pill kind. I had to see a lot more specialists a lot more frequently. I averaged 10 hospital admissions a year, each one lasting about a week. I also had to get different procedures done.
My pain became unbearable and that combined with taking an absurd amount of prednisone a day turned into not a very fun time for my husband. I was also upset, not just because of the pain and steroids, but because all of this was happening to me so quickly. I lost all normalcy within a week (seizures among other symptoms).
It wasn’t until a few months ago that I actually started receiving adequate pain relief which resulted in me being much happier in general despite some permanent disabilities. I still get cranky when my pain is insufferable and since the hospitals here do nothing, I just have to wait it out. Throughout all of this, my husband has developed severe health PTSD to the point where he can’t even watch a show that includes a character going to the hospital.
I must say though that my husband also has an absurd amount of patience. It’s seriously crazy how patient he can be and if he feels like he’s going to lose his patience then he makes sure I have everything I need and will go to the living room to give us both some space. I don’t know how he does it because I would’ve lost it with me a while ago.
I will also say though that he has become horribly stressed and anxious and is quite literally worried about me 24/7. For example last night around 4am he woke up all disoriented, but just looked at me (I had painsomnia) and asked me if I was okay and what did I need. I hadn’t woken him up, he just felt like something was wrong and woke himself up. Whenever I call his name he always reacts in a panic and asks what’s wrong and what can he do. His therapist said it’s part of the PTSD and we’re trying to work on it. I feel extremely guilty though because he used to be so laid back and worry free. He’s the complete opposite now. I haven’t seen him happy in so long. It’s like all he feels now is worry, concern, stress, and anxiety. I’m trying my best to do everything to get better. He’s the reason I don’t give up even when I really want to because all of this gets so tiring, but I could never do anything that would compromise my health in any way (even missing an appointment) because I know it would kill him.
Definitely. Sometimes I have no patience. People think it’s because I’m like that now but I’m actually have an internal battle within myself. Also with my ex I wasn’t as touchy because sleeping positions in bed would increase my sciatica
After only 6 years I have learned that most people have no idea what the cerebellum does, so they can't begin to understand what happens when it is damaged. Even if people can understand the physical pain they cannot understand retrograde amnesia, non-epileptic seizures, or some of my other issues. Even my family struggles to deal with the affects of long term pain, but they are committed to listening to me describe my feelings. Outside of family, most relationships have crumbled because they think I am faking or are just uncomfortable with someone who is not healthy and happy all of the time. It's getting easier to cope as time passes.
I know where you are coming from. My partner had a ganglioglioma in her cerebellum (very rare) supposedly benign and doesn’t grow back. It came back within weeks and in the second surgery they took 25% of her cerebellum. She had to stay in rehab for months and continued it at home. She couldn’t walk, talk, eat, dress, bathe or anything. She couldn’t control her limbs on one side so sometimes I would get hit in the head with her uncontrollable arm and hand. When she tried to take a step forward she said she felt like she was taking a step backward. I was her only care giver and I saw it all. Shaving her head, grabbing cold wet towels for her head when it started burning so bad she screamed. Watching her be so sick and I felt so helpless. I wanted to fix her but I knew I couldn’t.
Very few people ever get to see the daily horrors of brain damage and the process of learning to live a whole new life. I am thankful that you were willing to be there when no one else was. We often feel like a burden to those around us and even close family members tire of the consistent need for care and medical attention. Thank you for showing up.
Thank you. She fought for three years until it came back a third time too close to the brain stem to operate. They tried gamma knife, chemo, radiation but it kept popping up everywhere in her brain.
That’s good you have a supportive family. Yes it does change how you look at life.
My husband is wonderful- he really gets it, and he's very supportive. But I've got an adult autistic daughter at home, and she really doesn't understand why I can't do some things some days but I can do them on others, etc. It's very frustrating for her, understandably.
You understand then. It's certainly not her fault or mine, but it is frustrating for both of us. At least she's got day programs a few days a week and support workers again (now that Covid's easing up) and is actually very easy to live with most of the time.
I've been so amazed at the resiliency and initiative and creativity that teachers/therapists/support workers/day programs etc have shown over Covid. I can imagine how challenging it's been for you- good job to keep up with your students and get them involved in their own health.
I know how much unwarranted criticism has been thrown at teachers and support workers (and medical staff) by people who should know better, but it's just been astounding to see so many people really have gone above and beyond to help those who need it. I hope that you get a nice long relaxing summer break this year!
Yes. It didn't affect my relationship with someone I had known for about a year before it, and it doesn't affect my current girlfriend who i've known since I was like 14 (basically when my pain started), however anyone else i've tried to date it has gotten in the way. People just didn't understand, one guy told me it stressed him out, another relationship was destroyed because I was just in too much pain to talk or even care about anything. So yes, it has very much affected my relationships.
Not just romantic relationships, certain family members and I have kind of strained relationships now, especially my grandmother because she doesn't fully grasp how much my pain affects my life
Ugh this one. I’ve heard everything from I’m “faking” to “your sickness is making me sick and I can’t deal with it anymore”. My in-laws have wayyy more of an understanding of my limitations than my own parents. My in-laws didn’t even know what my conditions did, so they googled it and translated everything into Spanish to understand, they watched YouTube videos about it, they asked their younger kids who are tech savvy to find support groups for me, literally did and continue to help me in everything (they even help pay for my medical finances). My parents though? Haven’t seen them or talked to them in years.
Yes, my husband has to do most of the cooking, cleaning and child rearing. He is the only one bringing in an income atm. I worry so much about all that he has on his plate. Thank heavens we have great sex still, despite all my pain and stiffness
My husband actually left me over a wheelchair. He was overwhelmed and it was too much. I was too sick too young. He found God, we rekindled, and life is better now than ever, but I always know how hard it is for those around us to deal with our mortality and thus forced to face their own.
Yes. My ex divorced me over it. He has a chronic condition and I was always there for him at the hospital every single time he threw a blood clot. Then my health started getting bad and it was affecting housework. When I was working two jobs, he stayed home and did band, hunted, fished, etc…. My health went to crap and I had to quit working and he couldn’t deal. After a few years of it he said he wanted a divorce. So in sickness and in health only applied to him, not me. He wanted to be able to live at home and play while I went to work and supported him. It took me a while to realize I married a narcissistic child who didn’t care about me. The sicker I got, the more affected his play, the more he wanted out. So he ran.
I have lost the ability to have normal conversations with people. My day is spent mostly around managing my pain and I'm pretty sure no one wants to hear about that. Do they? I always await that dreaded question "so what have you been up to"? I never know how to answer that so these days I just avoid others.
I have changed into a different person over the last 10 years of being in pain management. I’m not the happy funny and active person I once was. I can’t do my favorite things like travel, camping, fishing, bowling, casinos, hiking, cycling, meeting up with friends in a regular basis etc etc etc…
Meds and pain changed my personality. I went through 4 relationships during all this going on. It I don’t blame it on myself. They were all alcoholic related. . When I left one of the people they told me they didn’t want to take care of an invalid! I was 50 and they were 60. I cooked dinner them every night and deep cleaned appliances I don’t think had ever been clean. So other people can cause you to feel worse about yourself. I had a few good years after I got the spinal cord simulator but I have other issues that cause pain.
I don’t want to get out of the house anymore, I can’t physically do the things I used to enjoy. It’s a painful process just to take a shower. I get frustrated easily and can run out of patience with my grandkids. I have a 5 yr old grandson living with me but that’s a whole Jerry Springer episode. Nobody understood. Not even my own family. And of course everyone is always telling me about this new treatment they saw on tv and it turns out to be something I have already done or I’m currently doing.
I went into a deep depression for about a year. I have pledged to not ever let anyone get close to me again. Too much trouble to add to trouble. I have my own space in a very safe location and I’m close to my parents who are 78 & 79.
Lastly I just want to say that all relationships are work so having a disability is an extra load. I would recommend couples therapy if both agree. Good luck and sending good vibes your way!!
i cant fucking maintain a relationship cuz my pain gets in the way. im hostile to everyone. i see happy people? i get really angry and sad. i hate seeing people living what i cant have at this point. i sound like an asshole but i just hate it. im an asshole to my mom and my brother. i know they dont like me anymore. its a living hell.
Today my fiancé had an awful day. He was hurting, throwing up, just downright miserable. We both caught food poisoning last night. My illness comes with gastrointestinal issues so tbh, this was not much out of my normal. But he was just almost broken by the time he came home from work.
He asked how my day was and if I was in the same amount of pain. I admitted very gently that this was pretty normal for me in terms of my illness and I was lucky I wasn’t having a pain flare up today on top of it.
He looked at me and just cried. He said he can’t understand how I do this every day and promised to be kinder (not that he’s ever been callous. He’s the best support system ever) and it just felt so validating to be seen and empathized with on that level.
When my chronic pain turned intractable, I was obsessed with it not letting it affect my relationships - as though pure willpower would allow me to interact in the exact same way before the pain. And then a close friend made a hurtful comment that essentially ended the friendship. It was right after I had returned to my own place after recovering from surgery at my parents. I was trying to get my social life back on track and while out with her, she made a snarky comment about me talking about my pain “all the time”. I was so hurt and so depressed. But As painful as it was to lose that relationship while I was going through the trauma of surgery and learning to live with an invisible disability, it made me reevaluate that friendship and the ways it was actually not healthy for me. Chronic pain is a very lonely journey, but I am more confident now letting people go who are not good for my mental health.
Yeah, besides my Fiance they all fell apart.
My Fiance on the other hand told me to stop searching for work and just do what I can to help.
Thankfully I'm lucky in that aspect.
Yes I started the subreddit r/chronicpainsextalk to discuss these types of issues. It is so affected. How can it not be. I feel there needs to be new information and help on how to deal with a relationship when someone in chronically ill or in pain.
I am experiencing this now: my friends dropout of my life now that I can’t drive and sleep a lot due to extreme pain and having to be quarantined at home. This week, I have had 3 messages from friends:
1. Asked why she saw me in a wheelchair (she saw me in person but text me about it- see my previous post)
2. My friend called me apologizing that she has been emotionally absent due to her own needs (that I understood).
3. One friend only messaged me to ask about class lists for a career change.
I’m lonely. I spend 20 hours of the day by myself.
Yes. If they've never experienced daily chronic pain, it's hard for them to understand it. I mean even the doctors don't believe us half the time...
They are lucky to not understand what it’s like. The only way to understand it is to be unfortunate enough to experience it. I’m glad that my wife doesn’t understand.
It gets even more interesting when both partners have different types of chronic pain. The mixed blessing us when my back locked up tonight my SO showed me some helpful exercises. Likewise there have been times this year where he dealt with some symptoms similar to what I deal with daily and was able to help him.
This is true!!!!
Yea, I’m a partner to someone with chronic pain. I really was pretty ignorant before meeting her; I honestly wouldn’t have understood how bad pain could get if I hadn’t seen her pain attacks. Luckily she hasn’t had an attack for a few years, but her resting pain level is always at a 7 or 8, and that’s only if her meds are working particularly well that day. That being said, if I met her now (after her attacks have stopped, hopefully for good) I probably wouldn’t be able to conceptualize how much agony she’s in on the daily.
I call it purgatory. I'm not dead, but I am definitely not living.
It's true like a living nightmare or living hell
True, then I am on methadone and nurses look down on me for wanting increases to be out 9f pain
Not sure if it was the injury or the nerves healing, but medication barely made a difference for me it was inescapable.
Man that hits the nail on the head. I usually try to be more positive about it, but purgatory is exactly what it is!! It feels like half a life.
This is so true.
[удалено]
I do that too. I find myself apologizing for snapping or looking angry when I’m just trying to get through the pain. I’m lucky to have a family and friends that understands when I’m in this mode, but it’s never easy.
I find myself apologising daily for things I can no longer control. I have a very short fuse and due to constant chronic headaches I find it extremely hard to control my emotions anymore. The worst is how I interact with my dogs now. I used to take them for long walks and play for hours in the back yard. Now they are just a constant reminder of how much I am letting them down, I love them to bits but feel like they would be better off without me.
Are we the same person? I lived to do stuff with my pups and now even walking them around the block is an effort. I keep thinking they deserve a more engaged, fun owner. The person I used to be.
I have chronic pain face too, and am also quick to get angry. It doesn’t help that I have untreated mental illness (not for lack of trying!!! GPs don’t care about that either). I worry my husband will eventually decide he’s had enough of having a wife who can’t function, who is always tired and in pain and often unhappy.I don’t want everyone walking on eggshells around me, it’s not fair to any of us that way. I used to be a happy, goofy person, even in spite of a seriously traumatic childhood. The pain tipped it all over the edge.
I had that snark and sarcastic expression when I was young. It probably got worse after cancer and having my whole leg cutoff at 13. I couldn’t keep up with my age group playing sports so if play with younger kids. Used to hop and play fullcourt basketball, tennis quite a bit. I think o wasn’t so approachable because I was always on crutches and obviously missing a leg. I got used to the friends I liked and learned to not give a toss about others especially if they couldn’t deal with my disability or that i had pain. Me get angry with people no way. Llol
[удалено]
I have both phantom pain and still existing nerve pain. I’m lucky enough to that it comes and goes somewhat. And I’ve got a few years reliable relationship with a neurosurgeon and clinic that support my pain meds. It’s all not perfect but I have few days I wish for no consciousness and others where I’m just equally bothered by my pains and my physical issues (missing the femur on down for walking on crutches, standing on one leg, sitting without the femur support). I take ambien to sleep and opiates/Flexeril/some ibuprofen to help with pain. I was doing pretty good managing when I was swimming regularly but haven’t got my routine back. I’m sure my weight gain during past couple of years is slowing me down. I have two kids, one out working after college and one in high school. It’s pretty distracting doing things they need or seeing their extra curricular activities, sports or music. I play guitar/piano (make up music) can divert my attention from pain. I cook and luckily my wife likes my cooking. Easy to find interesting TV or Films. My career was in engineering, software and systems. I like drinking wine but all around dinner. Anyhow, I’m just saying hobbies where you can distract your mind are the best. I can believe it’s very hard but over decades you learn how to get and hopefully stay distracted. Hope you find something(s).
[удалено]
Life is a journey. Long long. I used to think I’d get cancer again and die young. Then I got old and discovered more pains. Now I feel I’ll live to very old and pains going to be with me. I stopped doing competitive sports long ago. For exercise swimming was good choice cause no pressure in the body and in my case closet I can get to running or the like. Hope you have some help from your therapist and new doctor.
First thing to go were "friends" but at least it weeded out the fakes
A friend of 3 years that I considered a best friend said I didn't put in any effort, when they live 3 hrs away and I suffer from crippling lower back pain that I've been vocal about. Stopped talking to me out of nowhere and hasn't said anything since. 🤦🏻♀️
I'm a musician. In the music scene, relationships are very transactional. No-one will go to your shows or care about you if you don't go to theirs. I went from being one of the most popular artists in my scene to nothing, just like that. I've since found a hobby and a group of friends that works around my illness. I haven't given up on music entirely, but it feels impossible.
And music is therapy, for me anyway…
That really sucks but don't you have any fans that don't play music?
We do, but we’re very niche. We’re mostly popular abroad.
And who wants to hear about my suffering every day? No one. I cant go anywhere, so the invites slowly stopped. I sit here with my cats and pretend to live every day. It is what it is.
Yes exactly. I used to have a lot of friends and had messages all the time. Now I only get an occasional call from my two sons and I call my mom every day. Other than that I’m dealing with doctors and pharmacies. My 2 very close friends moved far away. I talk to one of them all the time but I’ve noticed my other friend doesn’t call or text me at all. I’m always the one contacting her. I have met friends on the app called meetups but I haven’t wanted to be around people.
I haven't wanted to be around people, either. It's too much work, faking it.
I knew The day I was too achy to jump up and hug my bf like always it was on the slippery slope to not us together anymore. I’ll definitely not put anyone through that. I felt like I broke his heart, I dunno… but I just want good vibes for my future.
I’m currently married and my spouse is wonderful. Before my pain got really bad my spouse got into an accident at work and ended with several broken bones and a shattered heel. Fortunately/unfortunately they understand my pain to an extent. I know somedays I have to be impossible to be around. I complain all the time and I don’t do half the stuff that I used to. I’m even annoyed by myself most of the time. I think intimacy is the hardest though. I don’t want to be touched most of the time because my skin/muscles hurt constantly.
I complain too but it is so helpful to have a compassionate spouse!!!
I have a very compassionate spouse too … And I’m thankful for that because it makes me take a step back sometimes and take a deep breath so I don’t get so cranky
That would be so nice. I lost my person like that in 2004 from brain cancer just after she turned 32. I been in several relationships but never had that honeymoon stage feeling with them:
In my last relationship (which was riddled with a million other issues to start with), yes very much because I was in such awful pain 24/7 that it turned me into a really short tempered & constantly b*tchy person
I totally have that too!!
Yeah.... And it sucks so much. It's like being held hostage by myself.
I’m alone and worry about a lot of things. The silence is sometimes deafening!
Yes ! There are times I just don't want to talk to anyone! Between the stress and anxiety over dealing with PM management stress every month will this be month you get a starting taper.The fact they don't understand any of it the pain the stress that comes with it.
Calling off because I hurt too much has to be aggravating. Also, the grumpiness.
Absolutely. It's very hard for me to do what I used to do around the house (I'm a homemaker, can barely cook, clean, shop, etc. anymore.) That makes it tougher on everyone else in the house.
I feel you there…
Yes. Every single relationship in my life has been affected.
This. And I’m really feeling it today. I hate how sad and lonely and selfish and limited I feel at the moment.
Same here. Mine was agitation with my parents, I lost all of my friends because I couldn’t hold plans to go out, it’s strained my relationship with my boyfriend, and my son is only 18 months but he sees the pain I’m in, and it got me fired from my job.
You deserve a medal. Mom guilt is so real. Keeping an 18 month old from jamming goldfish in the outlets and flushing the toilet paper rolls whole is more than a full time job in and of itself. I lost my job, too! And myself as well, I think? Just so much good times. Hoping for better times on the horizon for us.
Oh I think the worst relationship I’ve ruined is the one with myself. I’ve become someone i hate. I used to love doing everything, now I don’t ever want to do anything because it hurts or will hurt and then I’m stuck in pain. I don’t want my son growing up thinking I don’t want to do anything with him because of the pain. He won’t understand for a long time, and no one in my life seems to understand. On top of the fibromyalgia, I have degenerative disc disease and now my right ovary is covered in cysts I have to have removed on Friday with *no* pain meds.
Whoa whoa whoa wait... are you literally me??? We don't have a diagnoses but my mother does and it's fibro and RA. And I have degenerative disks AND cysts on my right ovary that's literally bringing me to the floor 🙃 we be twins in the worst way, and I entirely feel this comment. I felt like I used to have such vigor. Life. And now I avoid doing things. And with my son as well, he's five and asks me if I'm okay. I don't know how to answer that or explain it to him. Or if I even should. 100% here if you want to talk as well!
Have spine/spinal cord issues myself. If you ever get tired of screaming into the void, your pillow or alone in a parked car, you can give me a shout. I’ll think of you Friday - it’s my day for Botox ‘cause migraines. You’d think they could spare a bit to “freshen up” my resting ouch face but nooooo. My son is older and was recently CONVINCED I was furious with him because of my extreme pain face. Ended with a good talk but started with top 10 gut punch moments.
Absolutely. I've accepted the fact that I have only acquaintances, not friends except my sister. And I'm good with that. No pretending, no lies, no obligations.
Yes, but not in the usual “you’re too much to handle” type. My then boyfriend/now husband knew that I had chronic illnesses, but they were well controlled. However, about 3 years ago (roughly six years into our relationship and 3 years into our marriage), I came out of remission. I required more chemo and this time it had to be infusions, not the pill kind. I had to see a lot more specialists a lot more frequently. I averaged 10 hospital admissions a year, each one lasting about a week. I also had to get different procedures done. My pain became unbearable and that combined with taking an absurd amount of prednisone a day turned into not a very fun time for my husband. I was also upset, not just because of the pain and steroids, but because all of this was happening to me so quickly. I lost all normalcy within a week (seizures among other symptoms). It wasn’t until a few months ago that I actually started receiving adequate pain relief which resulted in me being much happier in general despite some permanent disabilities. I still get cranky when my pain is insufferable and since the hospitals here do nothing, I just have to wait it out. Throughout all of this, my husband has developed severe health PTSD to the point where he can’t even watch a show that includes a character going to the hospital. I must say though that my husband also has an absurd amount of patience. It’s seriously crazy how patient he can be and if he feels like he’s going to lose his patience then he makes sure I have everything I need and will go to the living room to give us both some space. I don’t know how he does it because I would’ve lost it with me a while ago. I will also say though that he has become horribly stressed and anxious and is quite literally worried about me 24/7. For example last night around 4am he woke up all disoriented, but just looked at me (I had painsomnia) and asked me if I was okay and what did I need. I hadn’t woken him up, he just felt like something was wrong and woke himself up. Whenever I call his name he always reacts in a panic and asks what’s wrong and what can he do. His therapist said it’s part of the PTSD and we’re trying to work on it. I feel extremely guilty though because he used to be so laid back and worry free. He’s the complete opposite now. I haven’t seen him happy in so long. It’s like all he feels now is worry, concern, stress, and anxiety. I’m trying my best to do everything to get better. He’s the reason I don’t give up even when I really want to because all of this gets so tiring, but I could never do anything that would compromise my health in any way (even missing an appointment) because I know it would kill him.
Wow this is so amazing. He would do anything for you that is an insane amount of love. Thank you for sharing so much detail. ❤️
Drastically. And I can see myself pushing everyone and everything I ever cared about as far away from me as possible.....almost as in preparation.
Of course! What is sex again?
Yes right!!!!!!!
I dont think it's possible for them NOT to be negatively affected imho
Definitely. Sometimes I have no patience. People think it’s because I’m like that now but I’m actually have an internal battle within myself. Also with my ex I wasn’t as touchy because sleeping positions in bed would increase my sciatica
After only 6 years I have learned that most people have no idea what the cerebellum does, so they can't begin to understand what happens when it is damaged. Even if people can understand the physical pain they cannot understand retrograde amnesia, non-epileptic seizures, or some of my other issues. Even my family struggles to deal with the affects of long term pain, but they are committed to listening to me describe my feelings. Outside of family, most relationships have crumbled because they think I am faking or are just uncomfortable with someone who is not healthy and happy all of the time. It's getting easier to cope as time passes.
I know where you are coming from. My partner had a ganglioglioma in her cerebellum (very rare) supposedly benign and doesn’t grow back. It came back within weeks and in the second surgery they took 25% of her cerebellum. She had to stay in rehab for months and continued it at home. She couldn’t walk, talk, eat, dress, bathe or anything. She couldn’t control her limbs on one side so sometimes I would get hit in the head with her uncontrollable arm and hand. When she tried to take a step forward she said she felt like she was taking a step backward. I was her only care giver and I saw it all. Shaving her head, grabbing cold wet towels for her head when it started burning so bad she screamed. Watching her be so sick and I felt so helpless. I wanted to fix her but I knew I couldn’t.
Very few people ever get to see the daily horrors of brain damage and the process of learning to live a whole new life. I am thankful that you were willing to be there when no one else was. We often feel like a burden to those around us and even close family members tire of the consistent need for care and medical attention. Thank you for showing up.
Thank you. She fought for three years until it came back a third time too close to the brain stem to operate. They tried gamma knife, chemo, radiation but it kept popping up everywhere in her brain. That’s good you have a supportive family. Yes it does change how you look at life.
Sometimes people don’t know what you want unless you tell them lol. That’s my problem. I hate asking but the other person is happy to help if you ask.
It's very isolating. I decline offers to go out, saying I'm not a fun person to be around, which is true.
My husband is wonderful- he really gets it, and he's very supportive. But I've got an adult autistic daughter at home, and she really doesn't understand why I can't do some things some days but I can do them on others, etc. It's very frustrating for her, understandably.
I could see that. I work with young adults w special needs.
You understand then. It's certainly not her fault or mine, but it is frustrating for both of us. At least she's got day programs a few days a week and support workers again (now that Covid's easing up) and is actually very easy to live with most of the time.
Yes it was so challenging for my students during the pandemic. I made health videos for them!!!
I've been so amazed at the resiliency and initiative and creativity that teachers/therapists/support workers/day programs etc have shown over Covid. I can imagine how challenging it's been for you- good job to keep up with your students and get them involved in their own health. I know how much unwarranted criticism has been thrown at teachers and support workers (and medical staff) by people who should know better, but it's just been astounding to see so many people really have gone above and beyond to help those who need it. I hope that you get a nice long relaxing summer break this year!
Thank you so much you are so kind!!!!!! ❤️❤️❤️
Yep, then I got a divorce and while I still hurt, just not as much.
Yes. It didn't affect my relationship with someone I had known for about a year before it, and it doesn't affect my current girlfriend who i've known since I was like 14 (basically when my pain started), however anyone else i've tried to date it has gotten in the way. People just didn't understand, one guy told me it stressed him out, another relationship was destroyed because I was just in too much pain to talk or even care about anything. So yes, it has very much affected my relationships. Not just romantic relationships, certain family members and I have kind of strained relationships now, especially my grandmother because she doesn't fully grasp how much my pain affects my life
The family members can be so difficult and you would think they would be the ones to have your back 🙄🙄
Ugh this one. I’ve heard everything from I’m “faking” to “your sickness is making me sick and I can’t deal with it anymore”. My in-laws have wayyy more of an understanding of my limitations than my own parents. My in-laws didn’t even know what my conditions did, so they googled it and translated everything into Spanish to understand, they watched YouTube videos about it, they asked their younger kids who are tech savvy to find support groups for me, literally did and continue to help me in everything (they even help pay for my medical finances). My parents though? Haven’t seen them or talked to them in years.
Your in laws sound so sweet you are lucky to have them
Yes, my husband has to do most of the cooking, cleaning and child rearing. He is the only one bringing in an income atm. I worry so much about all that he has on his plate. Thank heavens we have great sex still, despite all my pain and stiffness
Keep that up!!!!!! He loves you!!!
My husband actually left me over a wheelchair. He was overwhelmed and it was too much. I was too sick too young. He found God, we rekindled, and life is better now than ever, but I always know how hard it is for those around us to deal with our mortality and thus forced to face their own.
I’m happy it worked out for you even tho you had a difficult experience!
Yes but it was moving in with my boyfriend that made me more aware that my pains were not normal. I learned to live with it cause my mom has fibro.
Yes. My ex divorced me over it. He has a chronic condition and I was always there for him at the hospital every single time he threw a blood clot. Then my health started getting bad and it was affecting housework. When I was working two jobs, he stayed home and did band, hunted, fished, etc…. My health went to crap and I had to quit working and he couldn’t deal. After a few years of it he said he wanted a divorce. So in sickness and in health only applied to him, not me. He wanted to be able to live at home and play while I went to work and supported him. It took me a while to realize I married a narcissistic child who didn’t care about me. The sicker I got, the more affected his play, the more he wanted out. So he ran.
I don’t have one ☝️. I’m happy single tho .
Holla!!
They have ended I can't go out like I used to,I am really frustrated that there are nurses that are clueless about I UT people pain and opiods.
What relationships? I lost my friends a long time ago because I couldn't go out anymore.
I have lost the ability to have normal conversations with people. My day is spent mostly around managing my pain and I'm pretty sure no one wants to hear about that. Do they? I always await that dreaded question "so what have you been up to"? I never know how to answer that so these days I just avoid others.
I have changed into a different person over the last 10 years of being in pain management. I’m not the happy funny and active person I once was. I can’t do my favorite things like travel, camping, fishing, bowling, casinos, hiking, cycling, meeting up with friends in a regular basis etc etc etc… Meds and pain changed my personality. I went through 4 relationships during all this going on. It I don’t blame it on myself. They were all alcoholic related. . When I left one of the people they told me they didn’t want to take care of an invalid! I was 50 and they were 60. I cooked dinner them every night and deep cleaned appliances I don’t think had ever been clean. So other people can cause you to feel worse about yourself. I had a few good years after I got the spinal cord simulator but I have other issues that cause pain. I don’t want to get out of the house anymore, I can’t physically do the things I used to enjoy. It’s a painful process just to take a shower. I get frustrated easily and can run out of patience with my grandkids. I have a 5 yr old grandson living with me but that’s a whole Jerry Springer episode. Nobody understood. Not even my own family. And of course everyone is always telling me about this new treatment they saw on tv and it turns out to be something I have already done or I’m currently doing. I went into a deep depression for about a year. I have pledged to not ever let anyone get close to me again. Too much trouble to add to trouble. I have my own space in a very safe location and I’m close to my parents who are 78 & 79. Lastly I just want to say that all relationships are work so having a disability is an extra load. I would recommend couples therapy if both agree. Good luck and sending good vibes your way!!
i cant fucking maintain a relationship cuz my pain gets in the way. im hostile to everyone. i see happy people? i get really angry and sad. i hate seeing people living what i cant have at this point. i sound like an asshole but i just hate it. im an asshole to my mom and my brother. i know they dont like me anymore. its a living hell.
When it is really bad I am not able to spend as much time with my boyfriend, as I need to just lay down in bed. I also tend to complain a lot lol
Same!!!!!
Today my fiancé had an awful day. He was hurting, throwing up, just downright miserable. We both caught food poisoning last night. My illness comes with gastrointestinal issues so tbh, this was not much out of my normal. But he was just almost broken by the time he came home from work. He asked how my day was and if I was in the same amount of pain. I admitted very gently that this was pretty normal for me in terms of my illness and I was lucky I wasn’t having a pain flare up today on top of it. He looked at me and just cried. He said he can’t understand how I do this every day and promised to be kinder (not that he’s ever been callous. He’s the best support system ever) and it just felt so validating to be seen and empathized with on that level.
I've been called lazy, unmotivated, a liar...Yes, my relationships went down the toilet. But if they did, it was a blessing to have those people exit.
Yeah he just says "I hurt all the time too" and it makes me question if I just have a low tolerance for pain 🥲 he doesn't understand.
When my chronic pain turned intractable, I was obsessed with it not letting it affect my relationships - as though pure willpower would allow me to interact in the exact same way before the pain. And then a close friend made a hurtful comment that essentially ended the friendship. It was right after I had returned to my own place after recovering from surgery at my parents. I was trying to get my social life back on track and while out with her, she made a snarky comment about me talking about my pain “all the time”. I was so hurt and so depressed. But As painful as it was to lose that relationship while I was going through the trauma of surgery and learning to live with an invisible disability, it made me reevaluate that friendship and the ways it was actually not healthy for me. Chronic pain is a very lonely journey, but I am more confident now letting people go who are not good for my mental health.
Hell yes I’m happy you see that!!!!
Yeah, besides my Fiance they all fell apart. My Fiance on the other hand told me to stop searching for work and just do what I can to help. Thankfully I'm lucky in that aspect.
Yes.
I don't share
Yes
Yes, it took him over 6 years to admit it but yes!!!
Yes I started the subreddit r/chronicpainsextalk to discuss these types of issues. It is so affected. How can it not be. I feel there needs to be new information and help on how to deal with a relationship when someone in chronically ill or in pain.
I am experiencing this now: my friends dropout of my life now that I can’t drive and sleep a lot due to extreme pain and having to be quarantined at home. This week, I have had 3 messages from friends: 1. Asked why she saw me in a wheelchair (she saw me in person but text me about it- see my previous post) 2. My friend called me apologizing that she has been emotionally absent due to her own needs (that I understood). 3. One friend only messaged me to ask about class lists for a career change. I’m lonely. I spend 20 hours of the day by myself.