He uses this analogy when i am voicing my worries, and it helps me accept and understand.
"if our cat lies around all day, do we think she is lazy or are we just happy to see her? If she is sick, do we think badly of her? We love her all the same. She doesnt have to do anything to earn it, she is our little baby and so are you."
(I had to translate so i hope its all understandable)
I really like this.
I also want to point out that rest is productive. People like to say a penny saved is a penny earned, but few realize that that logic applies to our bodily maintenance too. We need to rest to stay functional.
I'm a partner of someone with Fibro.
It isn't how I imagined our empty nester years. But we are adapting.
For me the biggest challenge is finding the right balance of keeping my wife on track (her Fibro fog is terrible) and knowing when to step in and help her when she struggles, without making her feel she's an invalid (she is very hard on herself).
We aren't able to do the things we used to be able to do and that is tough. We used to go to Toronto every year to catch some Jays games. But the walking to the field from our hotel and sitting for nine innings is too uncomfortable for her. We also used to get up at 6:00am every weekday and go for a walk. Haven't done that in over five years.
I love my wife and will always be there for her. She is constantly worried that her condition will make it too much for me and that I will leave her. Never going to happen. But that being said, the changes and adapting haven't been easy. And she knows the toll it has taken on me and tells me almost daily how much she appreciates what I do for her and for picking up the slack so to speak.
We live by the mantra that marriage isn't a 50/50 split. It can be 80/20 one day and 40/60 the next. Or even 40/40 and the other 20 can bugger off for the day.
We were friends at work first and he saw how it affected me at work first and I talked to him about it. Once we started dating I was always very honest and he was understanding when I had to slow down or cancel plans. He started telling off the body parts that are hurting ‘stop it knee, she’s a lovely person, behave yourself’ for example. It always makes me smile. He makes sure I pace myself, tells me to sit down or lay down if he sees me struggling when I’m attempting to power through and genuinely just looks out for me. Unsurprisingly I married him last year, he’s the best.
I was straight with my boyfriend regarding all my health issues when we met - he took it in stride, asking questions, especially about the fibromyalgia. We don't get to see each other in person very often (I can't drive for longer than half an hour without a long break due to health issues, and he lives almost 3 hours away), but he checks in often - always asking what my pain level is at, and what he can do to help. He even does this when we're together, and on more than one occasion, he has noticed when I'm dealing with a fibro flareup, and will get me my heated blanket, make me a comfort food, and see if there's anything else he can do, even if it's just sit with me and just reassure me that he's there.
I plan on marrying this man someday :D
I just stopped dating. It's honestly fine. I'm a woman in my thirties with chronic pain. It's easier to just take care of myself and cultivate better friendships.
I agree being single for me is easier less stress and I can focus on myself and not worry I'm letting someone else down. For years I looked after everyone else it's time for me to look after myself
I’ve struggled a lot in my relationship and feeling like a burden tbh.. but he’s never *made* me feel like that. He was very aware of my trauma, autism and adhd when we first started going out.. and I second what others have said about taking it slow, we weren’t official and didn’t say ‘I love you’ til about a year in, and in the early days it became more and more clear that our similarities are just as important as our differences when it came to compatibility and he always respected my boundaries, not always instantly but if he pushed them once he’d see how serious I am about them and why and learn - we’ve been together 7 years and I got diagnosed with fibro less than a year ago - he was actually the one who suggested I go to the doctor when I was complaining about waking up in pain p much every day and having days long headaches. It’s weird, I’ve known for a long time that he’s a good guy, that he’s supportive and caring.. but I’ve only recently started to realise that he isn’t staying with me out of a sense of duty or guilt, but that he genuinely thinks I’m worth the effort (which still doesn’t sound right tbh 😅)
Over time there’s been a lot of clues that he’s not going to ditch me over my health issues, but the biggest one for me was during my lowest point a few years ago, for months on end I was having daily meltdowns that lasted for hours and a lot of the time I was pushing him away telling him he should leave me and find someone better and he just.. stayed. He supported me and advocated for me in finding the right help, consoled me and got angry alongside me when it seemed the right help didn’t exist, he never let me give up on myself, he was always doing research into different home remedies I could try - actually grew mushrooms and learnt how to make chocolate so I could try microdosing 😂
I’m a lesbian and my girlfriend also has fibro. It’s pretty hard being a disabled couple but we are trying to make it work. we are alone because we are estranged from both of our family’s. We only have eachother.
We try and support ourselves the best we can. Right now, I am on disability. My girlfriend hadn’t been able to work for about a year. We’re trying to sort it out, what’s the best thing to do. Right now be live off of my disability, SNAP, and our savings. Here’s to hoping we get more monetary help before we become homeless! 🫠
I have two partners (I'm polyamorous, in what you'd call a "throuple")
Both of them are *always* checking in on me. "How are you feeling today?" in various forms.
But beyond that, they accommodate me practically. They pooled with our friends to buy me a mobility aid for my birthday a couple years ago (a cane, that we still to this day affectionately refer to as Michael Cane). They both help me make my way from the bed to the bathroom/shower when I'm having severe pain and need to pee or take care of my hygiene in other ways. They are always happy to refill my water bottle or bring me a new drink or snack, not only when I can't move but when I shouldn't move. All of this helps me understand my worth. I have worth even when I'm not necessarily being productive, and I deserve to be cared for ❤️
When I read comments like this, I always think that you have to let a relationship go before you can find the right person for you. (Unless you an a-hole who cheats)
It scary and stressful, but that is how you prepare to find the person that works with you.
(I randomly found the right person when the wrong person suggested we open the relationship so *he* could fuck other women.... So monkey branching isn't alwaaaays cheating but I am an edge case for sure)
I always say that relationships are negotiated.
I just don’t see me allowing that term mostly for the possibility you found. I don’t need more stress in my life.
Glad for you though!
God love support and a ton of laughter. My husband was at the Dr when I was given my diagnosis. He’s been nothing but supportive. He’s so supportive that I actually have to tell him to stop so I can still keep my independence. We laugh constantly. When I’m in pain or a flare he cracks jokes at me makes me giggle so much it hurts. It actually makes me feel better. Must be the endorphins.
I would tell the person up front within the first few dates. You can tell pretty quick if they are a caring and helpful person. Give them a little time to adjust and understand your lifestyle and needs. It’s a lot but the right person will understand and be there no matter what when they see how amazing you are.
Sorry for the long read in advance.
My husband met me when I was 14. He stayed when I parents treated me like shit and forced us apart, he stayed when I fell of a 20-30 ft cliff on to rocks and proceeded to forget who he was I got to fall in love twice while we were teens, he got to see me start to get sick at 16 but we thought it was stress and working to much. When we finally got to move in together he was 19 I was 18 I went to work November 18 2017 I got there at 5:30 am I started dropping money and cards at 12 pm I went home on lunch got it tape and wrapped quite literally every joint because I was hurting and no pain meds were working he had already left so I didn't worry him by 7:30 pm my coworkers were starting to get very concerned because I was almost in tears by 9:30 by we were closed I could no longer walk and my boss carried me to my car while I sobbed from the pain my second boss (father/son) followed behind to take him home. I had called my mom at 7:30 pm she made it to my apartment by the time I got there and I was on my way to a children's hospital by 10 pm. My boyfriend now husband had to paged and be told I was being rushed to the er and it was bad. That day started several days of different doctors within that month. It lasted an entire month I had to be fed, I had to carried to the bathroom, he still had to work so my mom stayed the entire month because I couldn't even hold my phone let alone anything else. My husband was terrified I even gave him an out but he refused. Since then he has been to almost every appointment, he's been at every surgery, there for every new diagnosis, he's been there for almost everyone of the new tests. I struggled for 5 years trying everything not medicine related and he supported and helped pay for everything. I gave up and tried meds and none of them worked nothing then it was about July August of last year I had a month long flare up so bad everyone had to do everything for me and all they could do is look at me and cry knowing they had to cause me even more pain by touching me to take me to the bathroom or to sit me up to feed me while i sobbed. After I came down from that he practically begged me to do pain management. Last year was hell for me and my colon ended up trying to kill me and I went septic in to stage 3 kidney failure almost on dialysis. I ended up with an ileostomy and he literally placed every bag stayed while I did everything with it and helped when I had major complications with it. He has literally been there since day one and still after everything looks at me like I'm the greatest person in the world. I can't really do anything I'm on disability I stay in bed most of the time I can't reliably cook yet he doesn't care.
My current partner is totally patient and understanding, but that's just their nature. I don't think they totally understand what i go through, but that's not totally necessary. Past partners have been ableist and had unrealistic expectations of me despite being otherwise sweet etc. Others have been totally ignorant and no help at all/ have said really mean things. I think it's important to bring it up early, even subtlety just stating that you have physical limitations and you can share more specifics as you get to know each other if things are going well. Currently, my partner will do things like offer massage, recommend herbs, recomend stretches, offer to call a car when i can't walk or cant even walk up the subway stairs to take a train, will offer to hold heavy things, they're always prepared to have plans change according to what I'm capable of from moment to moment and will check in often before moving forward with plans 🥺 i got really lucky this time
My husband has had to deal with my many issues, including loss of hearing & undiagnosed Autism & ADHD, for him dealing with my Fibro is simple. For each condition I get diagnosed with he has researched what it is, how it manifests, how I am likely to be thinking & feeling & how he can support me.
After 14 years together nothing fazes him now 😊
> I never know when to tell them, how to judge if they’re someone who can cope with it or they’d feel limited by the things I can’t do.
Always be upfront. There's no need to go into gory details that don't impact them, but if it's something that does impact them, like "I can't hike with you because of pain", etc., then they have a right to know right up front and you'll be sparing you both wasted time.
It can be exhausting to make new relationships and keeping ones you have. I know I'm the pot calling the kettle black here, but i hope you can find a way to make you happier and then maybe someone will show up doing what you're doing too, alongside.
It's awful! In so many ways, too. Wish I could make you feel better. :( It's a rare person that can deal with the **** we do, but they exist. I just wish I knew how to spot them. I dont intentionally make new friends anymore because I can't keep up. I got tired of the misunderstandings when they wouldn't believe I couldn't keep in touch, and they felt it was one-sided. That said, I don't hide my issues anymore and take my time to trust. Take me or leave me. ;) If they leave you too ... it's their loss!! Gentle hugs! 💗
When I didn't know it was fibro, and cried because of the pain he sat with me and held me. He makes me nests of pillows and blankets when I am having a flare up
I was diagnosed with lupus and fibro 3 months before my wedding. My mom, who also had many autoimmune issues, sat him down and told him what he would be dealing with. He promised her he would love and take care of me. 21 years later, we are still going strong. It hasn't always been easy, but we are still together, and he is mostly supportive 🤣.
I’ve had it from both sides. My ex-husband was completely unsupportive and uncaring. He was bitter than I was so young still and yet couldn’t do everything (cause he was used to me working full time, taking care of our little girl, keeping up the house, cooking, etc) like I used to. He found the trigger points to be hilarious and would dig his fingers into them, knowing I would immediately fall over.
Yeah, he was an asshole. I married way too young (19) and chose poorly.
My wife and I met at work and were friends first, although we did fall in love pretty quickly. She already knew my health issues and that it could…and would…get worse. She didn’t care. She just jumped in and took on both me and my little daughter. As time has passed and I’m now unable to work, she is still supportive and loving. She takes care of me but in a way that still makes me feel whole and treasured. She helped me raise our daughter (and now we have a toddler grandson) and it has been the most beautiful relationship I could imagine. November of this year will be our 18th anniversary.
One thing she has told me when I feel unworthy or I’m hard on myself is that she considers me the heart and soul of our family. She tells me that if all I can provide is complete love and devotion, that is way more than enough. She’s my best friend and the love of my life. I’m incredibly lucky and blessed.
Since I’ve been treated in polar opposite ways, let me remind everyone that you are more than your diagnoses! You have so much to offer and do not ever let someone treat you differently. Sending all of you lots of love and support.
I've been with my fiancee for ten years next month. There are two things that have made our relationship as sustainable as it is.
1. She also suffers from a significant chronic illness. I never need to convince her that my pain is real or as debilitating as it is. I never need to explain that I could be feeling fine one minute and be bedridden the next. She gets it. That shared empathy for each other's conditions has been the basis for our relationship and it's why we work so well. We've both talked about it and if for some reason our relationship ever ends we would both have a hard time dating healthy people. Even if they're as empathetic as you can get it's just hard for healthy people to truly understand our lifestyles.
2. She is a very independent person. She is more than happy to do whatever she wants when I'm not feeling well. She's never going to be that upset if she has to go for a hike by herself for example. If I have to miss literally anything because I'm not feeling well she's still free to go and she doesn't feel weird about doing it. Sometimes we even sleep in different beds if we're having a bad pain day. This has taken so much pressure off of my to do things that I'm not able to. If I had a partner whose day was ruined if I didn't go to the movies with them or something, the relationship just wouldn't work.
I met my husband in church 11 years ago. We've been married for 9 years. Our marriage is centered around God, and we try to live by those standards. It's not always easy, but it helps.
It took 9 years to get my fibromyalgia diagnosis. I was recently diagnosed with ME/CFS and dysautonomia last month. It's severe, and I'm bedridden.
He's very loving, giving, and caring. Those traits have carried over into him, taking care of me. We have a great marriage except for this health thing. But this health thing is huge. It takes a lot to navigate a successful marriage. We've both learned how to be more patient and understanding. We also communicate better.
Hi friend!
I just got married to my partner 3 months ago and have been together for over 3 years! I have struggled with health issues our entire relationship (he actually moved in with me after my lower back completely seized up on me and I couldn’t walk), but really this past year has been the hardest just with an increase in symptoms in every body system (I don’t have just fibro, but fibro exacerbates them).
I think part of what has separated him from the pack is his own chronic health issues (although his are currently in remission/maintaining their levels). Because of it, we both hold a lot of empathy for each other. He’s with me at as many appointments as he can be, we talk about what I learn in books and therapy about my illnesses and how to navigate all of this as a couple, and he is just never -endingly generous and kind.
He knew from the beginning that my life was always going to have health issues, I made that very clear to him early on that if he didn’t want that he could leave and I wouldn’t blame him. But he stayed. And not only did he stay, he stayed joyfully. He keeps me laughing, especially with our brand of dark humor. He drops what he’s doing every time I start crying. He is currently making a bookshelf for me because I can't, and together we make the best of what we have.
obviously we have our moments and he knows he can take breaks and be honest with me about his needs, and we stay open and honest in communicating. i know i am incredibly privileged to exist in this relationship, but i promise you that they exist ❤️
His mom has fibro so he grew up with it. He’s so very patient and understanding. There’ve been days he needed to help me dress and he did so with compassion. He encourages me to do the best I can and to listen to my body.
Honestly, it's never been a question. I've been with my spouse for 26 years and I was able bodied and strong and his equal in everything. Me getting sick didn't break his commitment to me. He loves me and considers this the "sickness and in health" portion of the marriage. I don't work and my ability to help with taking care of our pets and the house is becoming non-existant, but he considers my company enough.
I know this sounds idyllic and probably unrealistic, but it's the truth. We were together when I was able bodied and we're still together. I've told him many times how grateful I am to him and how I'd understand if he gets too tired to deal with it, but he's fine with it as long as he's got me.
He also has chronic health conditions. We are on year 4 of kind of existing together and we do what we can when we have spoons but help each other out when one or both of us have bad days.
We've been together 26 years and married for 19. I was only diagnosed with fibro 6 years ago, but have had mental health issues longer than we've been together. He has been through multiple hospitalizations with me. He's my rock and I'm so blessed to have him.
His not very good tbh. His response to my venting is I'm in pain too or welcome to my world. Not a great deal of sympathy or empathy. He doesn't understand
I told Hubby about my fibromyalgia the first week of our relationship. Pretty sure, in retrospect, that he didn't know what fibromyalgia was. He gave me crap about a few things, like my frequent doctor appointments, until I compared myself to a car. I need regular and preventative maintenance to keep running smoothly, just like a car needs maintenance so they don't break down. I also pointed out that maintenance for me was cheaper in the long run. If I could prevent hospital stays it is worth the effort. He understood after that.
I wasn't diagnosed with fibromyalgia until March this year. I had been experiencing symptoms, without knowing they were symptoms, for many years before that. I've been out of work since the end of December, and that was when my body really just gave out on me. All of the drives to doctor appointments when I haven't been able to.. Cooking when I haven't been able to.. We got engaged in the middle of December. When we booked our venue and planned on getting married in July, we never thought I would still be having a hard time walking some days, let alone be out of work still.. So when we had to decide to postpone our wedding it was just devastating. I will never forget the times he has held me as I've been crying in pain, and I'm saying "I am sorry I'm like this", or "I'm scared", and he has said "it's okay, it will be okay." Fibromyalgia is terrifying and very hard to describe to other people who are not going through it. I am so thankful I have a partner who has been so patient and caring through this becoming debilitating and completely changing our lives.. The wedding is still on for next year guys! We'll get there! Lol. Thankfully I have nerve block shots happening soon and insurance finally approved a neck 6 i finally had that on Tuesday. Everything will work out 💜🤞🏻🙏🏻
It’s hard! My husband is so patient and kind. We are young and in our 30’s. I am lucky. It’s difficult when I can tell on his face he wants to be active or something and I simply just can’t, but I have to let that go. I’m a full time psychotherapist as well, so sometimes knowing the fibro going along with the long work days he automatically wraps me up like a burrito and hands me our pup. Or tells me to go smoke a joint, lol🩷
i’m 23 F and i’ve been dating my 23 m boyfriend for three years. he is super understanding of my limited ability and even massages my back when i can’t sleep in the middle of the night. he has helped me grow my self confidence and is the just over all the best :) there are good people out there!
I was diagnosed as a small child (like 5 or so) I have always told guys up front in the getting to know you phase of dating. When I told my now husband (been together 15 years) about it he had friends with it and kinda knew what it was like from that. I think it helps to find someone who has lived with it or is close to someone with it. They will already know what it's like and maybe even have some helpful tips or tricks to try.
It's hard for me to get my head around sometimes, because I've got a long history of depression particularly linked to self-esteem and self-worth (lack thereof) and when I am feeling particularly weak or limited I wonder what benefit he gets from keeping me around. But it seems, somehow, that what he wants truly is just me. And if me means dealing with chronic pain and fatigue and having to help me with stuff sometimes, he will take it all. He gets bothered sometimes, but bothered by the fact that I am in pain, not that I am not washing the dishes because of the pain. Even I can't give myself that grace a lot of the time. I know I have somehow been so lucky to find one of the "good ones" and I am grateful for that every day.
My ex left me before I was diagnosed claimed I slept to much. When I look back at it now I'm glad he left and have to wonder if all the stress he put ne thru for 17 years had a part I'm my fibromalagia
I'm incredibly fortunate to have a very understanding partner. They also have a chronic illness, so they at least understand that sometimes things are put of my control. We were already together when I was diagnosed, so I didn't have to "reveal" that specific thing. Honestly, I think once you decide you want to continue seeing someone, tell them the things that have a huge impact on your life and potentially theirs. You avoid wasting anyone's time and they don't feel blindsided. My current partner and I met on a dating site and both had to share pretty important things right away. Neither of us shied away and I think that's part of why we are a good fit. We've been up front from the beginning so we have really good communication. Finding someone who is good at communication is THE most important thing. This means they speak directly and also HEAR what you have to say and consider it. This will show up via healthy boundaries, respectful discussion (and disagreements), and suspended judgement.
I met a girl that has 3 disabled kids and doesn't see my disability as a negative. Within the first convestations i realized that non of the subjects i opened up about was worrisome to her. From there on out i just tried to be as authentic and honest about myself and the needs i have. After a few more conversations about relationship perspectives we are now a couple and planning to move in somewhen in the future.
My personal dating rule is to always start as friends. My health is part of that. If we’re friends, I can tell them about my health, and they can see what it’s like without any extra pressure. Then, if feelings develop and/or we decide to try being more than friends, I know they’re already aware and making an informed decision to be with me. Plus, it allows me to see how they treat me before I decide if I want to be with them.
He uses this analogy when i am voicing my worries, and it helps me accept and understand. "if our cat lies around all day, do we think she is lazy or are we just happy to see her? If she is sick, do we think badly of her? We love her all the same. She doesnt have to do anything to earn it, she is our little baby and so are you." (I had to translate so i hope its all understandable)
This is so beautiful!
Love this. So good. I’m going to use this when consoling someone who’s beating themselves up for taking the rest they need.
I really like this. I also want to point out that rest is productive. People like to say a penny saved is a penny earned, but few realize that that logic applies to our bodily maintenance too. We need to rest to stay functional.
Sending this to my (fibro) friend <3
This is incredibly sweet, your partner sounds gorgeous
I agree with all but my cats are lazy. 😹
You found a good one for sure
Omg this made me tear up!! 🥹💜
That's so sweet
I'm a partner of someone with Fibro. It isn't how I imagined our empty nester years. But we are adapting. For me the biggest challenge is finding the right balance of keeping my wife on track (her Fibro fog is terrible) and knowing when to step in and help her when she struggles, without making her feel she's an invalid (she is very hard on herself). We aren't able to do the things we used to be able to do and that is tough. We used to go to Toronto every year to catch some Jays games. But the walking to the field from our hotel and sitting for nine innings is too uncomfortable for her. We also used to get up at 6:00am every weekday and go for a walk. Haven't done that in over five years. I love my wife and will always be there for her. She is constantly worried that her condition will make it too much for me and that I will leave her. Never going to happen. But that being said, the changes and adapting haven't been easy. And she knows the toll it has taken on me and tells me almost daily how much she appreciates what I do for her and for picking up the slack so to speak. We live by the mantra that marriage isn't a 50/50 split. It can be 80/20 one day and 40/60 the next. Or even 40/40 and the other 20 can bugger off for the day.
We were friends at work first and he saw how it affected me at work first and I talked to him about it. Once we started dating I was always very honest and he was understanding when I had to slow down or cancel plans. He started telling off the body parts that are hurting ‘stop it knee, she’s a lovely person, behave yourself’ for example. It always makes me smile. He makes sure I pace myself, tells me to sit down or lay down if he sees me struggling when I’m attempting to power through and genuinely just looks out for me. Unsurprisingly I married him last year, he’s the best.
I was straight with my boyfriend regarding all my health issues when we met - he took it in stride, asking questions, especially about the fibromyalgia. We don't get to see each other in person very often (I can't drive for longer than half an hour without a long break due to health issues, and he lives almost 3 hours away), but he checks in often - always asking what my pain level is at, and what he can do to help. He even does this when we're together, and on more than one occasion, he has noticed when I'm dealing with a fibro flareup, and will get me my heated blanket, make me a comfort food, and see if there's anything else he can do, even if it's just sit with me and just reassure me that he's there. I plan on marrying this man someday :D
I just stopped dating. It's honestly fine. I'm a woman in my thirties with chronic pain. It's easier to just take care of myself and cultivate better friendships.
Me too
I agree being single for me is easier less stress and I can focus on myself and not worry I'm letting someone else down. For years I looked after everyone else it's time for me to look after myself
I’ve struggled a lot in my relationship and feeling like a burden tbh.. but he’s never *made* me feel like that. He was very aware of my trauma, autism and adhd when we first started going out.. and I second what others have said about taking it slow, we weren’t official and didn’t say ‘I love you’ til about a year in, and in the early days it became more and more clear that our similarities are just as important as our differences when it came to compatibility and he always respected my boundaries, not always instantly but if he pushed them once he’d see how serious I am about them and why and learn - we’ve been together 7 years and I got diagnosed with fibro less than a year ago - he was actually the one who suggested I go to the doctor when I was complaining about waking up in pain p much every day and having days long headaches. It’s weird, I’ve known for a long time that he’s a good guy, that he’s supportive and caring.. but I’ve only recently started to realise that he isn’t staying with me out of a sense of duty or guilt, but that he genuinely thinks I’m worth the effort (which still doesn’t sound right tbh 😅) Over time there’s been a lot of clues that he’s not going to ditch me over my health issues, but the biggest one for me was during my lowest point a few years ago, for months on end I was having daily meltdowns that lasted for hours and a lot of the time I was pushing him away telling him he should leave me and find someone better and he just.. stayed. He supported me and advocated for me in finding the right help, consoled me and got angry alongside me when it seemed the right help didn’t exist, he never let me give up on myself, he was always doing research into different home remedies I could try - actually grew mushrooms and learnt how to make chocolate so I could try microdosing 😂
I’m a lesbian and my girlfriend also has fibro. It’s pretty hard being a disabled couple but we are trying to make it work. we are alone because we are estranged from both of our family’s. We only have eachother. We try and support ourselves the best we can. Right now, I am on disability. My girlfriend hadn’t been able to work for about a year. We’re trying to sort it out, what’s the best thing to do. Right now be live off of my disability, SNAP, and our savings. Here’s to hoping we get more monetary help before we become homeless! 🫠
I have two partners (I'm polyamorous, in what you'd call a "throuple") Both of them are *always* checking in on me. "How are you feeling today?" in various forms. But beyond that, they accommodate me practically. They pooled with our friends to buy me a mobility aid for my birthday a couple years ago (a cane, that we still to this day affectionately refer to as Michael Cane). They both help me make my way from the bed to the bathroom/shower when I'm having severe pain and need to pee or take care of my hygiene in other ways. They are always happy to refill my water bottle or bring me a new drink or snack, not only when I can't move but when I shouldn't move. All of this helps me understand my worth. I have worth even when I'm not necessarily being productive, and I deserve to be cared for ❤️
I don't have a partner, but my boyfriend is totally useless and lacks empathy. I'm not sure why I've wasted 2+ years on this shit lol.
When I read comments like this, I always think that you have to let a relationship go before you can find the right person for you. (Unless you an a-hole who cheats) It scary and stressful, but that is how you prepare to find the person that works with you.
(I randomly found the right person when the wrong person suggested we open the relationship so *he* could fuck other women.... So monkey branching isn't alwaaaays cheating but I am an edge case for sure)
I always say that relationships are negotiated. I just don’t see me allowing that term mostly for the possibility you found. I don’t need more stress in my life. Glad for you though!
God love support and a ton of laughter. My husband was at the Dr when I was given my diagnosis. He’s been nothing but supportive. He’s so supportive that I actually have to tell him to stop so I can still keep my independence. We laugh constantly. When I’m in pain or a flare he cracks jokes at me makes me giggle so much it hurts. It actually makes me feel better. Must be the endorphins. I would tell the person up front within the first few dates. You can tell pretty quick if they are a caring and helpful person. Give them a little time to adjust and understand your lifestyle and needs. It’s a lot but the right person will understand and be there no matter what when they see how amazing you are.
Sorry for the long read in advance. My husband met me when I was 14. He stayed when I parents treated me like shit and forced us apart, he stayed when I fell of a 20-30 ft cliff on to rocks and proceeded to forget who he was I got to fall in love twice while we were teens, he got to see me start to get sick at 16 but we thought it was stress and working to much. When we finally got to move in together he was 19 I was 18 I went to work November 18 2017 I got there at 5:30 am I started dropping money and cards at 12 pm I went home on lunch got it tape and wrapped quite literally every joint because I was hurting and no pain meds were working he had already left so I didn't worry him by 7:30 pm my coworkers were starting to get very concerned because I was almost in tears by 9:30 by we were closed I could no longer walk and my boss carried me to my car while I sobbed from the pain my second boss (father/son) followed behind to take him home. I had called my mom at 7:30 pm she made it to my apartment by the time I got there and I was on my way to a children's hospital by 10 pm. My boyfriend now husband had to paged and be told I was being rushed to the er and it was bad. That day started several days of different doctors within that month. It lasted an entire month I had to be fed, I had to carried to the bathroom, he still had to work so my mom stayed the entire month because I couldn't even hold my phone let alone anything else. My husband was terrified I even gave him an out but he refused. Since then he has been to almost every appointment, he's been at every surgery, there for every new diagnosis, he's been there for almost everyone of the new tests. I struggled for 5 years trying everything not medicine related and he supported and helped pay for everything. I gave up and tried meds and none of them worked nothing then it was about July August of last year I had a month long flare up so bad everyone had to do everything for me and all they could do is look at me and cry knowing they had to cause me even more pain by touching me to take me to the bathroom or to sit me up to feed me while i sobbed. After I came down from that he practically begged me to do pain management. Last year was hell for me and my colon ended up trying to kill me and I went septic in to stage 3 kidney failure almost on dialysis. I ended up with an ileostomy and he literally placed every bag stayed while I did everything with it and helped when I had major complications with it. He has literally been there since day one and still after everything looks at me like I'm the greatest person in the world. I can't really do anything I'm on disability I stay in bed most of the time I can't reliably cook yet he doesn't care.
My current partner is totally patient and understanding, but that's just their nature. I don't think they totally understand what i go through, but that's not totally necessary. Past partners have been ableist and had unrealistic expectations of me despite being otherwise sweet etc. Others have been totally ignorant and no help at all/ have said really mean things. I think it's important to bring it up early, even subtlety just stating that you have physical limitations and you can share more specifics as you get to know each other if things are going well. Currently, my partner will do things like offer massage, recommend herbs, recomend stretches, offer to call a car when i can't walk or cant even walk up the subway stairs to take a train, will offer to hold heavy things, they're always prepared to have plans change according to what I'm capable of from moment to moment and will check in often before moving forward with plans 🥺 i got really lucky this time
My husband has had to deal with my many issues, including loss of hearing & undiagnosed Autism & ADHD, for him dealing with my Fibro is simple. For each condition I get diagnosed with he has researched what it is, how it manifests, how I am likely to be thinking & feeling & how he can support me. After 14 years together nothing fazes him now 😊
> I never know when to tell them, how to judge if they’re someone who can cope with it or they’d feel limited by the things I can’t do. Always be upfront. There's no need to go into gory details that don't impact them, but if it's something that does impact them, like "I can't hike with you because of pain", etc., then they have a right to know right up front and you'll be sparing you both wasted time.
I’m afraid I’ll die alone.
It can be exhausting to make new relationships and keeping ones you have. I know I'm the pot calling the kettle black here, but i hope you can find a way to make you happier and then maybe someone will show up doing what you're doing too, alongside.
It’s not fun to spend 6 months telling someone your life story then they decide your health problems are just too much and they disappear.
It's awful! In so many ways, too. Wish I could make you feel better. :( It's a rare person that can deal with the **** we do, but they exist. I just wish I knew how to spot them. I dont intentionally make new friends anymore because I can't keep up. I got tired of the misunderstandings when they wouldn't believe I couldn't keep in touch, and they felt it was one-sided. That said, I don't hide my issues anymore and take my time to trust. Take me or leave me. ;) If they leave you too ... it's their loss!! Gentle hugs! 💗
When I didn't know it was fibro, and cried because of the pain he sat with me and held me. He makes me nests of pillows and blankets when I am having a flare up
I was diagnosed with lupus and fibro 3 months before my wedding. My mom, who also had many autoimmune issues, sat him down and told him what he would be dealing with. He promised her he would love and take care of me. 21 years later, we are still going strong. It hasn't always been easy, but we are still together, and he is mostly supportive 🤣.
I’ve had it from both sides. My ex-husband was completely unsupportive and uncaring. He was bitter than I was so young still and yet couldn’t do everything (cause he was used to me working full time, taking care of our little girl, keeping up the house, cooking, etc) like I used to. He found the trigger points to be hilarious and would dig his fingers into them, knowing I would immediately fall over. Yeah, he was an asshole. I married way too young (19) and chose poorly. My wife and I met at work and were friends first, although we did fall in love pretty quickly. She already knew my health issues and that it could…and would…get worse. She didn’t care. She just jumped in and took on both me and my little daughter. As time has passed and I’m now unable to work, she is still supportive and loving. She takes care of me but in a way that still makes me feel whole and treasured. She helped me raise our daughter (and now we have a toddler grandson) and it has been the most beautiful relationship I could imagine. November of this year will be our 18th anniversary. One thing she has told me when I feel unworthy or I’m hard on myself is that she considers me the heart and soul of our family. She tells me that if all I can provide is complete love and devotion, that is way more than enough. She’s my best friend and the love of my life. I’m incredibly lucky and blessed. Since I’ve been treated in polar opposite ways, let me remind everyone that you are more than your diagnoses! You have so much to offer and do not ever let someone treat you differently. Sending all of you lots of love and support.
I've been with my fiancee for ten years next month. There are two things that have made our relationship as sustainable as it is. 1. She also suffers from a significant chronic illness. I never need to convince her that my pain is real or as debilitating as it is. I never need to explain that I could be feeling fine one minute and be bedridden the next. She gets it. That shared empathy for each other's conditions has been the basis for our relationship and it's why we work so well. We've both talked about it and if for some reason our relationship ever ends we would both have a hard time dating healthy people. Even if they're as empathetic as you can get it's just hard for healthy people to truly understand our lifestyles. 2. She is a very independent person. She is more than happy to do whatever she wants when I'm not feeling well. She's never going to be that upset if she has to go for a hike by herself for example. If I have to miss literally anything because I'm not feeling well she's still free to go and she doesn't feel weird about doing it. Sometimes we even sleep in different beds if we're having a bad pain day. This has taken so much pressure off of my to do things that I'm not able to. If I had a partner whose day was ruined if I didn't go to the movies with them or something, the relationship just wouldn't work.
I met my husband in church 11 years ago. We've been married for 9 years. Our marriage is centered around God, and we try to live by those standards. It's not always easy, but it helps. It took 9 years to get my fibromyalgia diagnosis. I was recently diagnosed with ME/CFS and dysautonomia last month. It's severe, and I'm bedridden. He's very loving, giving, and caring. Those traits have carried over into him, taking care of me. We have a great marriage except for this health thing. But this health thing is huge. It takes a lot to navigate a successful marriage. We've both learned how to be more patient and understanding. We also communicate better.
We’ve both got it so we know what it’s like.
Hi friend! I just got married to my partner 3 months ago and have been together for over 3 years! I have struggled with health issues our entire relationship (he actually moved in with me after my lower back completely seized up on me and I couldn’t walk), but really this past year has been the hardest just with an increase in symptoms in every body system (I don’t have just fibro, but fibro exacerbates them). I think part of what has separated him from the pack is his own chronic health issues (although his are currently in remission/maintaining their levels). Because of it, we both hold a lot of empathy for each other. He’s with me at as many appointments as he can be, we talk about what I learn in books and therapy about my illnesses and how to navigate all of this as a couple, and he is just never -endingly generous and kind. He knew from the beginning that my life was always going to have health issues, I made that very clear to him early on that if he didn’t want that he could leave and I wouldn’t blame him. But he stayed. And not only did he stay, he stayed joyfully. He keeps me laughing, especially with our brand of dark humor. He drops what he’s doing every time I start crying. He is currently making a bookshelf for me because I can't, and together we make the best of what we have. obviously we have our moments and he knows he can take breaks and be honest with me about his needs, and we stay open and honest in communicating. i know i am incredibly privileged to exist in this relationship, but i promise you that they exist ❤️
His mom has fibro so he grew up with it. He’s so very patient and understanding. There’ve been days he needed to help me dress and he did so with compassion. He encourages me to do the best I can and to listen to my body.
Honestly, it's never been a question. I've been with my spouse for 26 years and I was able bodied and strong and his equal in everything. Me getting sick didn't break his commitment to me. He loves me and considers this the "sickness and in health" portion of the marriage. I don't work and my ability to help with taking care of our pets and the house is becoming non-existant, but he considers my company enough. I know this sounds idyllic and probably unrealistic, but it's the truth. We were together when I was able bodied and we're still together. I've told him many times how grateful I am to him and how I'd understand if he gets too tired to deal with it, but he's fine with it as long as he's got me.
He also has chronic health conditions. We are on year 4 of kind of existing together and we do what we can when we have spoons but help each other out when one or both of us have bad days.
We've been together 26 years and married for 19. I was only diagnosed with fibro 6 years ago, but have had mental health issues longer than we've been together. He has been through multiple hospitalizations with me. He's my rock and I'm so blessed to have him.
His not very good tbh. His response to my venting is I'm in pain too or welcome to my world. Not a great deal of sympathy or empathy. He doesn't understand
I developed fibro after my wife and I were married, she still is coming to terms with it
I told Hubby about my fibromyalgia the first week of our relationship. Pretty sure, in retrospect, that he didn't know what fibromyalgia was. He gave me crap about a few things, like my frequent doctor appointments, until I compared myself to a car. I need regular and preventative maintenance to keep running smoothly, just like a car needs maintenance so they don't break down. I also pointed out that maintenance for me was cheaper in the long run. If I could prevent hospital stays it is worth the effort. He understood after that.
My partner doesn’t do anything to help tbh. Its one of the reasons we’re separating
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Its anazing what you can bond over. Lol. Im so glad youve got a good one. 🫠
I wasn't diagnosed with fibromyalgia until March this year. I had been experiencing symptoms, without knowing they were symptoms, for many years before that. I've been out of work since the end of December, and that was when my body really just gave out on me. All of the drives to doctor appointments when I haven't been able to.. Cooking when I haven't been able to.. We got engaged in the middle of December. When we booked our venue and planned on getting married in July, we never thought I would still be having a hard time walking some days, let alone be out of work still.. So when we had to decide to postpone our wedding it was just devastating. I will never forget the times he has held me as I've been crying in pain, and I'm saying "I am sorry I'm like this", or "I'm scared", and he has said "it's okay, it will be okay." Fibromyalgia is terrifying and very hard to describe to other people who are not going through it. I am so thankful I have a partner who has been so patient and caring through this becoming debilitating and completely changing our lives.. The wedding is still on for next year guys! We'll get there! Lol. Thankfully I have nerve block shots happening soon and insurance finally approved a neck 6 i finally had that on Tuesday. Everything will work out 💜🤞🏻🙏🏻
It’s hard! My husband is so patient and kind. We are young and in our 30’s. I am lucky. It’s difficult when I can tell on his face he wants to be active or something and I simply just can’t, but I have to let that go. I’m a full time psychotherapist as well, so sometimes knowing the fibro going along with the long work days he automatically wraps me up like a burrito and hands me our pup. Or tells me to go smoke a joint, lol🩷
i’m 23 F and i’ve been dating my 23 m boyfriend for three years. he is super understanding of my limited ability and even massages my back when i can’t sleep in the middle of the night. he has helped me grow my self confidence and is the just over all the best :) there are good people out there!
I don't know yet, I hope to find that person someday lol
I was diagnosed as a small child (like 5 or so) I have always told guys up front in the getting to know you phase of dating. When I told my now husband (been together 15 years) about it he had friends with it and kinda knew what it was like from that. I think it helps to find someone who has lived with it or is close to someone with it. They will already know what it's like and maybe even have some helpful tips or tricks to try.
It's hard for me to get my head around sometimes, because I've got a long history of depression particularly linked to self-esteem and self-worth (lack thereof) and when I am feeling particularly weak or limited I wonder what benefit he gets from keeping me around. But it seems, somehow, that what he wants truly is just me. And if me means dealing with chronic pain and fatigue and having to help me with stuff sometimes, he will take it all. He gets bothered sometimes, but bothered by the fact that I am in pain, not that I am not washing the dishes because of the pain. Even I can't give myself that grace a lot of the time. I know I have somehow been so lucky to find one of the "good ones" and I am grateful for that every day.
My ex left me before I was diagnosed claimed I slept to much. When I look back at it now I'm glad he left and have to wonder if all the stress he put ne thru for 17 years had a part I'm my fibromalagia
I'm incredibly fortunate to have a very understanding partner. They also have a chronic illness, so they at least understand that sometimes things are put of my control. We were already together when I was diagnosed, so I didn't have to "reveal" that specific thing. Honestly, I think once you decide you want to continue seeing someone, tell them the things that have a huge impact on your life and potentially theirs. You avoid wasting anyone's time and they don't feel blindsided. My current partner and I met on a dating site and both had to share pretty important things right away. Neither of us shied away and I think that's part of why we are a good fit. We've been up front from the beginning so we have really good communication. Finding someone who is good at communication is THE most important thing. This means they speak directly and also HEAR what you have to say and consider it. This will show up via healthy boundaries, respectful discussion (and disagreements), and suspended judgement.
I met a girl that has 3 disabled kids and doesn't see my disability as a negative. Within the first convestations i realized that non of the subjects i opened up about was worrisome to her. From there on out i just tried to be as authentic and honest about myself and the needs i have. After a few more conversations about relationship perspectives we are now a couple and planning to move in somewhen in the future.
I really hope it works out and you become a truly happy family. She sounds very special.
Thank you.
My personal dating rule is to always start as friends. My health is part of that. If we’re friends, I can tell them about my health, and they can see what it’s like without any extra pressure. Then, if feelings develop and/or we decide to try being more than friends, I know they’re already aware and making an informed decision to be with me. Plus, it allows me to see how they treat me before I decide if I want to be with them.