Post # 1
When DH and I got together, I told him about my chronic illness. We’ve dealt with it the last few years, and he is amazing and totally supportive, 100%. Things have definitely gotten worse lately (I’m hoping/waiting for more surgery) and to say my quality of life is low is an understatement. I would love to hear from other Bees in the same type of situation – how do you make your marriage work? How do you deal with the stressful times, or the disappointments, or those times when you just can’t do what you’d like to do?
Post # 2
I have no insightful thoughts right now, but we do 🙂
Curious to what others say.
Post # 3
I have a chronic illness/invisible disability. It is really rough, but I don’t know what I’d do without my FI’s help. The best advice I can give you is to communicate. Your DH won’t know how to help you if you don’t tell him. And yeah, it sucks to have to say that you can’t do something today or you don’t have the energy, but sometimes it needs to be said. It will help if you can come up with specific things he can do to help you that will stop him from feeling helpless and give him a concrete way to give you a hand.
And try not to resent him. Nothing will kill your relationship faster than feeling jealous of the things he can do or resenting him for not being able to help you all the time. Sometimes he will have to say no, and sometimes there will be nothing he can do. That isn’t his fault, but it’s really easy to let your illness blind you and become angry. There are a number of online resourses and support groups both for people dealing with chronic illness and the people who love them. I would look into find a group (online or off) that will help both of you deal with the stress in healthy ways.
I don’t have any specific advice for dealing with stress, but remember to be kind to yourself and each other.
Sending good wishes your way.
Post # 4
LoveMyMister: i have a chronic illness and have been married only (almost) 2 years now, so we are still fairly new learning how our marriage is affected by my illness. My husband is very understanding and i am very fortunate for that. I try to remember this when i am feeling okay and try to do something extra special for him, whether it is cooking his favorite meal, going to a comic book store with him or giving him a little extra attention ;). I also always say “thank you for being there and understanding i needed to take time for me, i love you and appreciate you so much”
if its worth anything I have Fibromyalgia.
i highly recommend this artice:
23 Tips For Men on Supporting a Partner with Chronic Pain
Post # 5
Thank you all for your kind replies. Not that I’m glad you are also sick, but it’s nice to be able to talk to people who actually get it! A little more info …
DH and I have been married a few months, but I have dealt with my illness (endometriosis) for 16 years. This last year or so things have really gotten quite bad – I can barely get to the store to get groceries, with the pain/nausea/fatigue. I have no social life at all, and his consists of mainly doing stuff without me, because I don’t want him to miss out just because I’m stuck at home. Again.
Our marriage is strong and our relationship is amazing. I just have these serious bouts of guilt, you know? He deserves so much better! It’s bad enough that I have to suffer, but I hate dragging him down with me. Sometimes I wonder why the heck he married me in the first place! (Then he tells me it’s because he loves me, and I feel both better and worse lol)
I’ve definitely been dealing with depression and anxiety as a result of all this. Forgive the whine, but life is REALLY STINKING HARD right now. I will be having surgery soon (6 weeks) that will hopefully help give me a better quality of life again. I’m just stuck in this rut, day after day of not feeling well. I went off birth control in January to ttc but a) it hasn’t worked yet (sad) and b) it has made my symptoms a lot worse, which is really hard to deal with.
Post # 6
I am a former member of WeddingBee (150+ posts while engaged) who kind of just stopped posting after I got married, forgot my password when I tried to sign on after over a year of non-activity, and had to make a new account so I could catch up/see what was going on the married boards. Anyway, though I was just planning on reading tonight and not actually posting, I saw this post in the feed and felt I had to reply because I can relate.
I have chronic joint and pain issues (also an invisible disability – I like that term), which often make “normal” activity difficult (i.e. walking/standing for long periods of time, going up stairs, taking baths, hooking and unhooking necklaces/jewelry and bras, etc.) My husband has been incredibly sweet and supportive, always helping me and trying to make life a bit easier. Yes, I am on medication and I go to physical therapy, but it’s hard to remember how far I’ve come in managing my health in the middle of a severe, painful flare-up.
Those are the moments I wonder why he married me, a mid-twenty year old whose pain issues will only become worse with age because there’s really no “cure” for them. And I understand, OP, about what you mean by saying you think you drag him down when you suffer… I feel that, too. Luckily, we have good husbands that don’t agree with us about any of that! 🙂
I guess I really didn’t have any advice… I just wanted to be supportive and let you know others are going through the same thing and you’re not alone, though it’s easy to feel like you are. (I know). Good luck with the surgery, too. Hope all goes well!
Post # 7
- Wedding: October 2014 - Disney
I honestly dont know how my husband does it he is super man. He has seen me at my best: finishing a 70.3 half iron, and my worst: in arthritic/fibro pain I cant make it up the stairs. No matter what he support me. I try to make sure he knows he is loved and appreciated every day, he truly has made my life better. He will admit I can swim bike and run circles around him and he’s healthy yet I have multiple systemic issues and he says he just doesnt know how I do it. He’s proud of me though and the fact I’m using my story to raise awareness now for others who cant.
Post # 8
I’m sorry that you’re not feeling well, but I hope the surgery brings you some relief. I’m the caregiver in my marriage. My DH is still recovering from a severe traumatic brain injury 1.5 years ago.
The hardest part of having your life altered by disability (or illness, in your case) is that you must accept your limitations as a team. My DH may never be able to help with chores or even walk by my side, but we have our owm way if doing things. What is abnormal becomes your new normal. Try not to compare your marriage with anyone else’s.
Stay strong. Good luck to both of you.
Post # 9
@mrsxarae: Thank you so much for your comment. I’m sorry you’re having to deal with all of that! Your husband sounds wonderful. It’s amazing what love can make people deal with lol
@dewingedpixie: Raising awareness is so important! Good for you for stepping up to the challenge. It sounds like you and your husband are a great team. Congrats on all your sporty accomplishments, too! One thing I’m looking forward to (hopefully) after my surgery is getting to be active again.
@macintosh: You sound like an amazing wife. Your husband is so lucky to have you by his side. And you’re right – sometimes you just have to do things your own way. I often remind people, “It’s not always that I can’t, but that I have to do it a different way, or it takes a little longer….” It’s tough, and people can be judgey and cruel, but it’s better to focus on the positive. Thanks so much for your good wishes. I’m really hoping this surgery will give me my life back!
Post # 10
LoveMyMister: I can kind of relate. Although I don’t have a chronic illness I struggle with severe nerve damage left from a bad car accident. It has been three years and I still struggle with it. I get nerve blocking shots every 4 months to help with the pain, but unfortunately I still have days where I can barely make it through thE pain. And when the pain gets really bad I try to sleep it off. DH has been by my side since the paramedics calls to tell him they were airlifting me to the hospital and is always understanding. Im sure he gets frustrated but if he does he never shows me. I’m usually the one in tears bc I’m so frustrated of having the pain affect me so much this long after. I agree with PP that communication is very important… it effects both of you differently, but both of you none-the-less. I know how frustrating it is to have something make such a big impact on your life… And I know that without DH I cannot imagine dealing with this. I’m so grateful and blessed to have such a wonderful, understanding, supportive husband to stay strong for me on the days I feel like I can’t handle it anymore.
Post # 11
I can definitely understand. I have chronic health issues (mostly lupus, rheumatoid arthritis, and endometriosis). I have always been very upfront regarding my health issues with my husband. They have caused stress, but honestly we chose to lean on each other. My biggest problem is opening up and trusting – I’m not the best at telling him when I hurt. I’m more prone to try to hide my pain. We had to learn how to better communicate – meaning, I had to be able to tell him when I hurt and how he can help (often not much) and he needs to tell me when it’s stressing him too much. My husband is a nurse, so he is able to do a lot of care, but I also don’t want him to ever feel like I”m another patient.
I do work, but can not work full time. I’ve had to learn how to change my life to better fit my health and try to get enough sleep. Lately my husband has been great and very understanding. He is great about trying to make sure that I don’t push myself too much.
Post # 12
I’ll echo those who have said i couldn’t do this without my husband. I have fibromyalgia and am finally seeing some light after two incredibly difficult years. It just so happens that things stsrted to get particularly bad within a month if me moving in but he has never complained, waited in me hand and foot when i was exhausted and in pain and was a shoulder to cry on when things got too much. We chose the traditional “in sickness and in health for richer or poorer” vows simply because that’s what we’d been living through and it had so much meaning for us! (Because as I’m sure you’ve found, there are so many monetary sacrifices that go with chronic illness, from time off work to medial expenses & pills). I’ve often struggled with huge guilt that I’m not the girl he fell in love with… because I was actually at my healthiest (& still undisguised) the none months or so around when we started dating. And I feel bad he’s had to “carry” me for so long. But as he says, I would of course do the same if the tables are turned. I think the sweetest thing is that he’s really finely tuned to where I’m at and is good at telling me when I’m doing too much and is happy to step in and do whatever needs doing. I have a bad habit of pushing myself too far and sometimes a gentle reminder to slow down is really huge!
In January I quit a job i’d been struggling with physically and emotionally, took some time off before our wedding & decided to shake up my life a lot after it! It’s meant more sacrifice but DH has supported me every step of the way. I’m now in the middle of an 8 week physical/occupational therapy rehab programme, have enrolled in university (which I quit in 2008) via distance learning to complete my BA and have just got a new part time job (even without the study full time just got too much to cope with). The support I’m getting from DH through all of this is amazing and I love seeing how happy he is that I’m finally more like my olf self.
Living with chronic illness means coping with ups and downs, sacrifice and guilt but love is a pretty powerful thing if you ask me! I would have crumbled without DH. I think the key thing is communication and understanding and hugs on demand 😉
Wishing you all the best, my best friend has endometriosis so I know how torturous it can be 🙁
Post # 13
Macintosh: I’m so glad to hear that things are going better for you. I agree with your comment about accepting limitations as a team. Your DH is lucky to have you!
Post # 14
It is really hard to be chronically ill and in a relationship. I am in bed or recined about 90% of the time. I have been sick since we got together 3 years ago, but have gotten worse. He proposed to me the day I got out of the hospital after a week long stay which really showed me how he doesn’t see me as defective for being sick! We are both 25.
Sometimes I’m good company, sometimes due to fainting and vomiting and occasional cognitive difficulties, I’m not good company. I can do something small outside of the home about once a week, but usually that thing has to be doctor appointments.
Factors that I think have helped:
- Discussing my insecurities with him so he knows what I am thinking. Everyone has them. Mine just happen to heavily surround my disability. I ask him not to lie just to comfort me. If something bums him out, I don’t want him acting like it doesn’t. A lot of times things I am obsessing over aren’t even a big deal to him and haven’t even noticed or thought of things that are an issue. He hated when I used to keep in all of my insecurities and worries. If the house is a mess, I often find myself apologizing I can’t help more to which he always tells me he doesn’t care. He cares about a messy house only because I care.
- We can’t always find solutions to help ease the blow of what we are missing out on, but we always discuss it respectfully. There is never blame or guilting although sometimes I do cry that we have to do this at all. We brainstorm ideas of how to participate in something (even if just partially) and usually decide to let the idea sit for a few days before deciding anything. Having to decide right then is too much pressure.
- Communicate! Are you having a horrible day where you know you’ll be completely unavailable, even for simple conversation? Tell him! Is something nagging at your mind? Let him know. Do you know after you do “x” you’ll need to go home immediately (no pit stops!)? Tell him! Would you like to try and do something, but are unsure and would like the assurance you can stop as soon as you need to (even if this means leaving a restaraunt)? Tell him! Are you having an energy surge? Tell him and harness it, even if it just lasts 5 minutes. we both feel so much better when we are on the same page.
- I tell him what I wish we could be doing. If he tells me about an event when making small talk (perhaps a musician we love is performing near by), I tell him how fun it sounds and sort of daydream outloud what it would like to go. I know he tells me as small talk, but really he wishes he was telling me as an invitation. This lets him know I am not content just sitting at home and I also dream of the possibilities.
- I encourage him to go out with friends. Just because I am stuck home doesn’t mean he should be too! Caregivers need a break. I have to push him out the door to go have beer with his friends because he feels guilty. I try and lift guilt by saying what I will do while he is gone (bath and a book) or that the quiet will be nice.
- I often enlist family to help out with things I feel I “should” be doing as the one who stays home like cooking , cleaning, or laundry. It eases guilt and gives him a break.
- He almost never does this, but makes sure if he gets frustrated about me being sick, his anger is directed at the illness, which we view as “our” struggle, rather than me. I want to be out doing things like hiking as much as he does. We can both vent about how unfair this is.
- Allow yourself to mourn your loss. You have lost the life you imagined you’d have. Let yourself have “why me” days sometimes! Let him know that you are having a rough day so you are going to be mopey, but it has nothing to do with him as a husband.
- At the same time, don’t be all doom and gloom. Try and think of other things to talk about than symptoms. Look up news stories or fun facts or something like that to talk about if needed.
- Figure out what he really enjoys doing with you that you cannot often do due to symptoms, and try and if possible, sometimes sacrifice to make it happen. For me, this may mean more symptoms, maybe needing to go for an IV, or days in bed, but it is so worth it. Sometimes you can figure out ways to do something that meets your special needs. For example, we break up movies into 3 viewing sessions.
- Remember that you are more than the things you could once do. Remember you have a lot to offer even when it doesn’t feel like it. My fiancé doesn’t notice our floors need mopped (I sure do) but he does notice that I leave little cards out for him sometimes, how much his daughter and I adore one anither, that I help him handle his own problems, that I am good at helping him research something and make decisions, etc…. I can do all of that from bed. Not consistently…. but still.
- Ask how involved in your healthcare he would like to be and try and help it happen. Let him know “no-nos” For me, this includes asking questions in appointments that are completely out of left field for me. (A friend whose SO asked about depression comes to mind.) Also, I need to feel he is an advisor and supporter, not someone sort of pushing me to a particular treatment or way of managing my health.
Phew! I guess I had a thought or two! I am brain foggy so I hope this did not have note many typos. I just really wanted to share because this illness in rekationships is so hard.
Post # 15
SilverWire: I have to second all of this advice.
Sometimes, you just have to speak up. Let your husband know your limits and tell him how he can help. When I’m not well, FI usually takes on some of my chores (in addition to his own), because he knows that some days I just can’t manage.
Edit: I also take FI to doctor appointments when he’s able to make it. It allows him to ask the doctor questions, understand my disease (AS) and treatment more, and it helps him trust the doctor and his decisions. Making FI feel involved and informed has helped us.