I just recently married a man with an IGG4 disorder, which has caused tumors in his eye and lung and all over. He's had strokes and all kinds of things, by all rights, the doctors all consistantly agree that he should not be alive.

This... is the first night that I've really felt the stress. I'm sitting here in the hospital with him and then don't know what's wrong. He hasn't had the right symptoms to be a stroke, so they're running all the tests that they can. This is not our first time in the hospital for his illness, but it is our first time married.

I suppose that I just want to know what kinds of things others might do to help themselves relax and/or keep from crying out of worry while they're in the hospital with their partners. Any advice?

I graduated from art school a few months ago and around that time my live in partner got their fibro diagnosis but they’d been dealing with it for longer. I like doing art and making things and I’d like to explore new hobbies but doing it now makes me feel like I’m either neglecting them or being unproductive and shitty when I should be looking for a better job. I work a 30 hour/ week job and I wanted to start doing some freelance work but I feel that because that’s not exactly a steady market it’s not worth the effort since my partner became ill and we need the money to be more reliable. Overall I just feel like a shitty partner for doing anything that isn’t directly related to being with my partner or looking for ways to help out and i think it’s starting to take a toll and I don’t know what to do. I just need some advice and perspective I guess but idk...

Hey all,

So I've been with my SO for 14 years now. In the last couple of years her chronic illnesses have decided to step it up.

We haven't been intimate in about 6-7 months. Her nerve pain is so bad that I can barely even touch her, let alone get any sort of comfort for either of us. We also fight almost everyday.

I'm really getting close to the end of my rope. I can't bring in outside help because of her MCS(multiple chemical sensitivity) basically she is a bubble girl.

I can't take time off/away because we have animals that she can no longer take care of.

Not even sure what I'm posting or saying.... Just kind of getting it off my chest

My husband has multiple autoimmune digestive issues that cause him chronic pain, and I am feeling overwhelmed in knowing how to handle things. He was recently diagnosed with ulcerative colitis, and we have an eight month old son and no family nearby. I let him sleep in a separate room and I try to do everything I can, but I am getting really stressed as I am finishing a PhD and also trying to apply for jobs (which I feel a lot of pressure to do right away so he can leave his stressful job). The biggest problem I am having right now is that often if I am tense or upset about something he will panic and say I am causing him pain. I try my best to stay calm for him, but I am human and have emotions, and he is not able to be emotionally supportive of me. I don’t feel it is fair of him to say I am causing him the pain. He gets very defensive and never apologizes for anything unless I ask him; if he was more responsive to how I was feeling the stress level wouldn’t escalate In the first place. Any advice on this matter would be hugely appreciated!

Has anyone discussed an open relationship with their spouse? My drive is very high and my wife's has dropped off and is only furthered by anti depressants.

So over the last few weeks the weight of everything we've been through finally broke us. The lack of affection and connection that had been chipping away at my sense of security in our relationship finally sunk us. The resentment he built up feeling like any effort he made wasn't enough for me became too much and he lost the drive and desire to even try. I am devastated beyond words. I've been beating myself up mercilessly in the week since we've decided to split. Was I too needy? Was I unappreciative of his efforts? Should I have just settled for whatever he was willing and able to give, even if it wasn't reassuring me or making me feel loved the way I needed to? It's taken every single ounce of will power I have not to beg him to come back and promise that I'll accept whatever he's willing to give. I started this sub as a place for partners of those suffering with chronic illness to vent and share anything without judgement. I hoped it would give me (and others) insight and be a therapeutic outlet for me so that I could let off steam without directing it at SO and it would make me a better, more patient partner. Unfortunately, it wasn't enough to save us. But...now as I try to pick up the pieces and come to terms with where it all went wrong, it's been HUGELY helpful in reminding me of how we got here. Today I felt as low as I have since deciding to separate. I was reminiscing about all of the wonderful parts of our relationship and viewing it all through a very distorted, rose-tinted lense (as I guess is normal after a painful break-up). But I came here and read the many posts I've written over the last year and, for the first time in weeks, I was reminded of just how dark and stressful my day-to-day life was. The mornings I sat at work on pins and needles waiting for him to wake up and text me with his "daily report" on how he was feeling - and, more often than not, the crushing disappointment in hearing that he was miserable. The evenings of going home to a dark house because he hadn't gotten out of bed all day to even turn on lights. The feeling of inadequacy because even on his good days he was disconnected and too mired in his own misery for it to occur to him to show me any affection or offer any kind or loving words. The disappointment when I needed support and had to put my emotional needs aside because his were more dire. It's going to be a struggle for a long time. I know I'm going to have questions and regrets for quite a while. But coming here today has given me hope that one day I will look back without regret and realize the monumental amount of stress I was under for so long.

I hope anyone else who is struggling continues to come find this sub a place to vent and share. I wish you all the best.

How do you all deal with lack of intimacy? More specifically sex. I have a really high drive and the meds my wife is on make hers practically non existent.

I can't suggest an open relationship because that just leads to her feeling super self deprecating.

For those in the US, have a wonderful Thanksgiving holiday! I hope you all have plenty to be thankful for, and enjoy a healthy, happy holiday with your loved ones!

For all of the venting I do, I can honestly say that I do have so much to be thankful for. My kids are happy, healthy and thriving. My SO is doing better than he has in a long time. I have a wonderful, loving family and have been adopted into SO's family, all of whom I absolutely adore. I've got a good job that has kept us afloat since SO has been out of work. While sometimes I feel like we've gotten a "raw deal" with SO's health and all of the hardships that have come along with it, when I stop and think about it I do realize we're actually so blessed and fortunate and I am truly thankful. I hope you all find the same.

It's kind of a bummer that this sub isn't getting the activity that I'd like, but I guess I'll keep posting anyway,if for no other reason, than as a form of catharsis for me to get it out.

I've been in a funk lately, feeling like my life is not at all where I want it to be. Feeling like despite all of my efforts to do the right thing and be a good mom/partner/person it's never enough and I'm not the mom/partner that my family deserves. Subsequently, I've been more distant and probably less patient than usual with SO. I've truly been making a huge effort NOT to take it out on my family and to hide my unhappiness. SO finally asked me about it today (over text) and I replied that I just haven't been in a great mood. I assured him it wasn't over anything he did. While I KNOW that it's not his job to pry information out of me and it's my responsibility to communicate how I feel, my response admitting that I've been having a rough time was my way of opening the door to the conversation so I could confide in him and hopefully get some support. But I got ZERO response - total crickets. I feel like I "talk him off the ledge" almost daily. Whether it's because he's having a rough day emotionally or physically I always try to offer words of support and encouragement. But I never feel like I get the same support. For as tremendously stressful as our life together has been - worrying about his very serious and frequent heath issues, being the only breadwinner of the household, trying to make sure my children are taken care of, etc - I feel like my emotional needs have been pretty minimal. I plod on and do what I have to do and try not to dwell on the hardships most of the time. But there have been times where it gets to be too much and I find myself in a funk. And during those few occasions I've felt let down every time. If I say I'm having a rough time I get no response but it always seems that he winds up "one-upping" me and having an even worse day so, once again, my needs are ignored so that we can focus on his bad day. I absolutely DO NOT think he does it on purpose, I truly don't. But whether it's just dumb luck or intentional it leaves me feeling resentful and disregarded. I'm just so tired of feeling like my emotions are not important and not a priority, I'm tired of feeling like I give everything to everyone else and have no one who cares enough about me to ever make a real effort for me. I feel like I must be grossly overestimating my efforts and contributions to my family and I must actually be falling short in giving them what they need, because if they recognized the effort and sacrifices I make for them, they'd surely show more concern for me on the rare occasion that I need it. I'm just so tired of feeling short-changed at every turn.

So things finally seemed like they were improving for us - SO finally got on the right track with his meds and found something that seemed to be really helping his symptoms and we had a big financial improvement which finally gives us some breathing room. We were so grateful and happier than we've been in a very very long time. We finally had hope again...for all of about 1 month. Now it feels like we're right back to where we were. Between his chronic illness symptoms (that while reduced, have by no means disappeared), his anxiety, other random (and numerous) health issues that seem to keep cropping up unrelated to his chronic condition, and legal battles still ongoing from his long finalized divorce, I'm just so drained. I'm tired of waking up every single day wondering what catastrophe is going to befall him today. I'm so sick of sitting at my desk at work every morning waiting on pins and needles for him to wake up and text me and praying to hear that he's in good spirits. I'm tired of going home to a house that feels dark and depressing most evenings and knowing that I'm going to have to clean up after him when he's been home all day. I hate that I'm back in a place where every single day I question whether I can hang in there any longer and I dream about a life without all of these burdens. I've always felt so strongly that when you commit to love someone, it means being their strength when they need it and not keeping tabs on who requires more "attention". For a long time I was able to stay mindful of that and live by it. But I'm having a really tough time ignoring the resentment that's creeping in after years of sacrificing for his needs almost exclusively. I bring little "baggage" to our relationship - my children are young and can give us a hard time sometimes, but it's normal kid-stuff. Besides that, I have little drama with my ex, I'm basically healthy, I have a stable, reliable, full-time job that pays the bills. My life is very stable and very boring and I never have to rely on or burden him with anything. I'm starting to feel like it's so unfair that I'm under constant stress dealing with HIS issues and I fantasize about how freeing it would be if all I had to worry about was taking care of myself and my children. And I feel awful for feeling that way. I love him so much, I love the things that are great about our life together (our kids, our families, our dedication to each other, our playfulness, our attraction) but at what point are those things not worth the constant struggle? How can one person have so much "bad luck"? Why is it ALWAYS something with him???

My girlfriend got a weighted and heated head and neck warmer, and it's made her near constant 6 year tension headache disappear!!! (if only for the few minutes she has it on) It's so hard to be with someone and feel helpless towards them, but every once in a while there's a bright day. As she says: "it"s the little victories"

Hi, I (m) am in a committed relationship with my girlfriend, we've been dating for 3.5 years, she's the love of my life, and she has Amplified Pain Syndrome (AmPS) and Allodynia. Amps causes her to have chronic pain all over her body, and allodynia causes her nerve cells to register normal sensations of touch, heat, vibration, as sensations of pain instead. She rates her average week as an endured 6-8/10 pain scale. I've done my very very best to be as supportive as possible, and I think I've done a pretty good job, our relationship is really really fantastic, but sometimes it's really hard to be all I can be for her. Her birthday was recent, and as a present her dad bought tickets for her and her older sister to fly to Denver (4hr+) to go see Passenger. She got to the concert and eventually had to sit down (the pain in her feet is the worst by far, unbearable) people started to step on her and a woman even shoved her out of the way. My gf moved, and because of all the physical contact in the crowd, she violently threw up from the pain, and had to leave the concert before passenger even got on stage. I love her more every day, and I tell her everything, but I can't tell her that I'm running out of hope. I'll always stay with and suppert her, but it's hard to keep hope for her.

Hey there, I was recently diagnosed with EDS, and I was hoping you guys could give me some advice from your side of things to help me approach this in the right way.

Last year, my health went downhill, I was already with my partner at the time, but we didn't know at the time about any of my health problems. Now I have finally gotten back to work, my symptoms have gotten better, but haven't gone away, so I'm coming home from work not in the best mood/pain state.

Last night I kinda hit my wall where I needed to stop doing everything, I couldn't move, and my partner who totally has my back normally yelled at me about not feeding the cats, and then pitched a fit when I finally got up to go to bed, because I didn't bring her snacks. In the past we have had an agreement about her pestering me when I really do need to move just to get out of my funk, but this is at the end of a long day at work, and very much not the same situation.

I will be honest, I snapped, and it's been bothering me ever since. Partner grew up with a disabled mom, so it's not something out of her realm of experience, although it is something that was definitely not a consideration when we got together, I wasn't sick then.

I was hoping for some perspective on how to approach this conversation about yelling at me for not being able to do the things not being ok, with compassion to the face that she DID NOT sign up for this. I don't want to make her feel bad for being frustrated, I'm frusterated too, but jumping on me is also not the answer.

I don't want to give out too many personal details, but I'll say the following: We're both in our 20s, both university graduates, and have been dating for a few years. I have a feeling he'll propose within the next year or so. I'm female and my boyfriend is male.

So... long story short. Boyfriend was diagnosed with a chronic illness a few months ago. It seriously affects his quality of life. (It's not lethal or anything, but unless a cure is discovered in our lifetime, he's stuck with it for life.) It has no cure. There are medications, but their effectiveness is varied, they have some strange side effects, and they don't fully resolve his symptoms. I don't want to name the specific condition because it's uncommon and I want to maintain privacy, but I'll say that the main effect is that he has consistently depleted energy levels (which I guess is true for a lot of chronic conditions?).

I love this man dearly and believe he's my soulmate. The dilemma I'm faced with, however, is if I'm willing to risk having a significantly lower quality of life due to his chronic illness. I'm not talking about "oh, we won't be filthy rich" or something. I'm talking like, what if he can't maintain a full-time job, and we find it difficult to provide for our future kids on my income alone/primarily on my income? What if I need to go part-time or stay-at-home for health reasons later on, but doing so would cause us severe financial issues unless he works full time - and he may not be able to handle that? What if I want to go on family vacations, nice nights out to dinners, spend the weekends exploring local attractions - all stuff I've always dreamed of doing with my future husband and kids - and he's unable to handle it? Or even if he can occasionally do those things, he won't be fully "present" so to speak... because he's so fatigued. What if I have to tell my kids "no, we can't afford that/do that because Daddy..."

In short, my biggest fears are becoming resentful down the line, and/or being unable to provide for my future kids in the ways I've always wanted to. Also, having a dent to our romantic life too, because after a long work week (I have a fairly demanding career, not so much in terms of hours but in terms of energy/intensity) I just want to be able to unwind with my husband, sit down and have a heart-to-heart conversation, etc. but he might not be able to handle doing so as often as most guys would (in terms of energy level, not in terms of emotional capability). As it stands now he's always there for me when I really need him, always listens to my concerns, very loyal and reliable as far as he can be given the circumstances, but I worry that I'll need and/or desire more down the line. Even now, there's a bunch of fun date ideas I've had that we still haven't done because whenever we've actually had the time to pull them off, he hasn't had the energy.

What should I be considering here? Obviously most of you won't want to flat-out tell me what to do (although I'm totally open to hearing what *you* would do if you were in my shoes) but are my concerns valid? I don't want to let go of someone I connect with so deeply and who's such a wonderful person, all because he has a chronic illness... And technically, with anyone else, you'd almost never know what's in the cards down the line anyway, especially in terms of health. But on the other hand, I don't want to put a giant dent in my future plans for my family and my career, plans I've been dreaming of since I was a kid myself.

Any and all respectful advice is appreciated!

This is frustrating to write. So I apologize if it's poorly formated. My wife has fibro and I've been extremely supportive of her, especially when she needs to just take it easy. She recently started taking prozac and it's made our sex life even more non existant. Hearing, " I love you, " every 5 mins doesn't make up for it either... It makes me angry, I get it. I got it when you said it before and it hasn't changed... Sorry folks. I'm just aimlessly venting.

First I’m not gonna lie I’m a little bummed this sub isn’t getting any activity. I wish others would contribute,I know I’m not the only one struggling as the partner of someone with a chronic condition.

Truth be told, I guess I’m just feeling really deflated and inadequate all around today. Lately my SO’s emotional state has sunk to the lowest point I’ve seen yet and I guess depression and anxiety are contagious, in a way. I’m trying so hard to stay positive and encouraging and strong and patient. I’m trying to convey to SO that he is invaluable to us and that he is so unbelievably strong. But he doesn’t want to hear it. He is distant and, for the most part, has retreated into a shell and I feel so disconnected and alone. I would not consider myself to be the kind of person who needs a lot of validation or compliments. As a matter of fact “attention whores” annoy the crap outta me. But I miss the days where he would send me songs that made him think of me, or heartfelt texts telling me how much he loves & appreciates me. I miss fantasizing about or future together and what kind of wedding we’ll have. I want desperately to know that he still sees that future - because I still do - but in my heart I know that right now he doesn’t because he can’t imagine ANY future for himself. It’s so utterly defeating and heartbreaking to feel like he doesn’t see a future together when that’s what has kept me focused and given me strength to get through all of the heartache of his condition. It’s getting harder to see the light at the end of the tunnel.

Whether you're married to your chronically ill partner or not, if you've found yourself here I think we can assume you're completely committed to the relationship. I'm NOT married to my partner but I can say without any hesitation whatsoever that I am more committed to him without having to vow it in front of God and family, than I was to my husband when I was married. For most of our relationship I couldn't imagine anything at all that we couldn't get through or that I wouldn't be willing to fight for. And, for the most part, I still feel that way. But I'd be lying if I said there haven't been days where I questioned if it was worth it. I've noticed that I feel my most pessimistic and most defeated when I feel like my partner has pulled away and retreated into his own "funk". It makes me feel like I've sacrificed so much for nothing and causes me to question his commitment to our family and his faith in our future. I can and will do anything I have to for him, our relationship and our family but only if I know he's as committed to it as I am. On his good days he makes it very clear that he's committed to continuing to build a life together and that he can't imagine a future without me and our family. But on his dark days he can't focus on anything other than how horrible his circumstances are and how hopeless it all is. Those are horribly lonely days.

I'm divorced but have been in a relationship with the love of my life for about 4 years now. We've lived together for over 2 of those years. I have 2 young teenage children and he has 2 grown children. My children live with us and his college-age son lives with us when he's on break from school.

My SO has a condition called Arnold Chiari Malformation which is a condition where the back of his skull wasn't formed properly so his cerebellar tonsils weren't properly cradled in his skull. Subsequently, the tonsils herniate down into his brain stem, squeezing off the flow of cerebral-spinal fluid to his brain which, in turn, caused all kinds of horrific neurological symptoms. It's a congenital condition but he was asymptomatic his entire life and had no idea he had it until his 30's when he began having seizures out of nowhere. As a result of decompression surgery (before we met) he was asymptomatic by the time we met. About a year after we started dating (at which point we were in a serious, committed relationship) he began experiencing symptoms again, which is very common with Chiari, and they've gotten progressively worse. He is now back in full-blown Chiari flare-up. In the couple years between the recurrence of his symptoms and now, he's had to quit his job and file for SSDI because he's bedridden with horrific headaches and leg weakness an average of 3 days/week. He was unable to drive for several months because of the vision disturbances caused by chiari and during those months I worked full-time and had to taxi him and my 2 children all to EVERY activity and appointment. Not easy when you only get 2 weeks of vacation time per year. His SSDI claim has not been decided yet so in the meantime we're living on my salary alone, which has been incredibly stressful.

Despite it all, I've never doubted that SO is the love of my life and that I only want a future with him. I'm amazed at how he pushes himself to do whatever he can to take care of me and our kids whenever possible. But as much as I adore him we've absolutely had our share of really rough times because of this illness. It's been the most insane roller coaster ride of emotions I could've ever imagined.

As long-winded as this is, it's actually a really brief overview of my situation. I look forward to sharing more as time goes on and people begin to participate!

I'm so happy to finally get started on creating this community! I've been eager to get it up and running for some time now and I really hope it becomes a community of candor, sympathy, friendship and resources. I'm fairly new to the Reddit world so please be patient with me while I work on enhancing this page, I welcome any contributions or suggestions. I'll post my introduction in a separate post.