Recently a friend who has been working very hard to relieve the pain and other symptoms of her husband’s autoimmune disease said something that got my attention. She mentioned his latest problems and wrote, “I’m starting to get that this is probably always going to be a part of our life, this autoimmune disease.”
She gave me permission to share with you our conversation, just in case you, too, face an autoimmune disease in your marriage.
I wrote back:
You can look at it that way: this will always be part of our life. Or you can look at it the other way: how remarkable that we get this day/month/year together in spite of his body always trying to kill itself — thank God and a whole lot of scientists for modern medicine and the days when he can get some work or loving done.
I went with the first one for fourteen years and often felt oppressed by it until the reality of the second one hit me in the face.
(In case you haven’t read my bio, the disease somehow won and left me a widow.)
I just thought that the work we were doing was going to help him go into remission, and I’m starting to reconcile myself with the idea that maybe it’s not going to go into remission. Some days I don’t know how to shrug off the idea that the guy I love is in so much pain and there’s nothing I can do.
My empathy meter went to full-tilt. He had been through a lot more than just this disease in the last few months, and she had been with him through it all. For many weeks, she had done all the work of creating healthy juices for him from fresh fruits, vegetables, and plants, and it had helped. Now the darn disease had both of them feeling powerless.
I replied, and I share it with you in case you are in a similar situation:
So it didn’t get his body healthy enough to withstand the simultaneous stresses of one parent’s death, the other’s fatal illness, an urgent deadline, food poisoning, the flu, and pneumonia. It DID give him a bunch of comfortable days, and you can repeat them when you have the money, time, and energy to do so.
He probably would not have bothered to try juicing on his own, because his symptoms are so familiar to him.
What I am trying to caution you against is feeling defeated when his body reacts to stress or imagining yourself working as hard as you did with the juicing or living with his current mood for every day of the rest of your life. The resentment (whether toward him or the Fates) will screw up your marriage.
Be grateful he’s there, in pain or not, do what you can when you can to alleviate the pain if you can, and stay madly in love with him. Now that we know love actually strengthens the heart, improves breathing, and regulates digestion by toning the vagus nerve, know you’re making a real difference in his health even when you’re not chopping up vegetables or researching the next possible symptom reliever. And the release of oxytocin that love brings is likely to improve his mood.
Almost all of us will face serious chronic or acute disease or injury eventually, which means all of us will at some point be a loving spouse who feels powerless to help. This is a normal part of life. Ride it like a wave. Your role is to love, not to cure or to rescue. Resentment that it’s your turn to feel helpless now will only get in the way of fulfilling your very important role in your husband’s or wife’s wellbeing. Let it go.
Last weekend I happily got engaged to the love of my life, who coincidentally has a totally undiagnosed autoimmune disease. It’s been an ongoing battery of tests and biopsies most weeks, for several months now. I feel hopeful that the doctors are close to identifying specifically what autoimmune disease she does have. I do understand that a diagnosis, however progress, isn’t ever really going to make her well, but maybe feel somewhat better than she does some of her worst days.
I’m admittedly a little lost as to all there is to know about autoimmune, but I just try to be positive and supportive for her. 🙂
This blog post was pretty helpful in cluing me in a little on what I have to be prepared for in the years (hopefully decades) to come.
I’m still looking for more info on help of how to cope and be supportive for her. Any information you have that can point me in that direction would be greatly appreciated. Thank you.
Congratulations to the two of you, Steve! Most important thing to know is that pretty much any stress aggravates pretty much any autoimmune disease. So congratulations to you for checking out a marriage blog before the wedding.
Learn everything you can to do away with unnecessary stress: keep your positive interactions with her at least five times as frequent as your negative ones. Look for Third Alternatives the moment you realize you disagree. Assume Love and consider other explanations before you respond to an upsetting incident that doesn’t require immediate action. And let go of all your expectations about how marriage will go, except to Expect Love, which is pretty wonderful in all its forms.
Be prepared for occcasional role reversals and chore swaps when the disease flares up. Join a support group for her disease or, if there isn’t one in your area, for any other autoimmune disease: Crohn’s, psoriasis, psoriatic or rheumatoid arthritis, Graves, Sjogren, lupus, Type 1 diabetes, Addison’s, etc.
Don’t let her be the only one who maintains your social and family network. You and she are going to need them from time to time, especially if you add children to this equation.
And the first moment you start to feel any resentment toward her disease, get out and take advantage of your healthy body. Resentment erodes marriages, and we, the healthy spouses, can get there with the best of intentions. If she were blind, you would not give up driving or reading to make her feel better. She is likely to feel too ill at times to enjoy doing things you would like to do. Do them anyway, with friends who pose no threat to your relationship. Bring all your activity-raised endorphins home to her. Your high spirits will help her more than moping ever could, and they will protect your health.
I wish you two a wonderful marriage and long complete remissions. And I admire you for doing your homework in advance.
I started dating a man, knowing that he has a certain autoimmune disease. I knew it’s not going to be a piece of cake, as mom takes care of my dad for 25 years who also happen to have an autoimmune disease. I also knew my mom is going to be upset that I chose him (she was, indeed): “I wish you didn’t have to face it in the beginning of your relationship”
We got married, because despite his disease – he proved me he is incredible in every single way, I couldn’t dream of anyone better.
But this two years have been extremely challenging and tough.
Only wives who have husbands with chronic disease can understand what a wife has to go through.
Constant care, research, cooking of a special diet… And the risk of having non-healthy children.
I committed to this man. I just wish he appreciated me more often for all this, I wish he didn’t take it for granted 🙁
It’s likely he believes he is expressing his gratitude and/or doing as much in return, Anna. At a time when you are feeling delighted to know him, let him know that the words matter to you.
Wow. From a wife with an autoimmune disorder who has to do all the cleaning, cooking, and managing a family with 2 teens, 17 and 18, I commend your advise given to Steve and others especially inregard to stress. I envy Steves wife- how lucky she and others are who DO for their autoimmune spouse. I have Celiac with bouts of prediabetes and chronic liver concerns and my spouse often forgets that I’m not “normal” even though I often look it. Don’t be deceived- I walk around in chronic pain, find making my life safe to live in terribly time consuming and inconvenient but I am constantly reminded how grateful I am to have been properly diagnosed and have a healthcare provider that is helpful! Kudos to all of you who help your spouses and to you, you deserve much recognition!
Thank you, Tina. I am so sorry for the pain your condition puts you through. I know it’s hard, and I know it puts a stress on your marriage.
For you and other readers in similar circumstances: All spouses do for their spouses in their own way. Sometimes what we need (for example, an earlier end to our work day, before the kitchen is cleaned up) does not feel as loving to our spouses as what they choose to do for us (buy us gifts or take us on vacations or push a little harder at work to be able to afford a better home), so they don’t choose what we wish they would. And sometimes we (with autoimmune diseases or not) don’t ask for what we need until we’re full of resentment about not getting it, and there is a big difference in the response when we ask with resentment instead of gratitude.
I need to remind myself constantly of both of these.
Thanks for this post. I found it while googling to attempt to find some narrative of someone in similar circumstance to myself. I am in a long term relationship with a wonderful man who has continually worsening chronic pain related to an undiagnosed likely, autoimmune disease. I have been feeling more and more helpless lately and find myself taking it out on the person I love which only makes matters worse.
I have tried to keep the latter mantra as my mindset of “how remarkable that we have this time now” but lately the bitter “we will live with this always” has crept in. Reading the post was a helpful reminder that the bitter mantra will only make matters worse. As you mention, it is likely that at some point in time all of us will likely face the reality of being helpless in the face of a loved ones illness. It is particularly hard when it occurs what seems far too early [it just doesnt seem FAIR, we are both young I am in my late 20’s and he in his 30’s], but this was a wonderful reminder that pain or no pain, I am thankful to have found someone I love entirely and who does so much for me despite being in chronic pain. I will push myself to appreciate the moments we are able to enjoy on days where his pain levels are lower.
J.L., I ache for you and you man. And it’s not fair, no matter what age it shows up. It’s also not fair that you are loved while others are abused or lonely. We shape our experience by choosing to look in one direction or the other, and it sounds like you are looking in the right direction.
“We will live with this always” may not turn out to be a bad thought, either, if you keep the bitterness at bay. When I was dealing with this, I unfortunately kept the mindset of an acute illness, thinking about what we’d do when he went into remission. I never gave much thought to checking out different approaches to sex. I did not go looking for activities we might both enjoy that might distract him from his pain. And I did not let my healthy body go be healthy and active while he was curled up with a book and a heating pad, so I was out of sorts more often than necessary, cutting into our available good times together. I was foolish. You definitely are not, thanks to this wonderful internet that brings us strangers together.
I love this. I went searching for “Life with someone who has an autoimmune disease” because when my partner was diagnosed with Lupus – I was diagnosed as Partner of someone with Lupus. To me, this meant that both of our lives changed in that moment. We have 6 kids and immediately I started researching and trying to do everything and remove every stress and know how to take every precaution possible to keep her healthy and well. After just days I am feeling exhausted but I want to be this loving and supportive partner who is grateful for every moment, because I am. I just needed to know / hear some of the things you had to say. I needed to hear that taking care of myself and keeping myself well would enable me to love her better, which would help her more than seeing me tired and stressed and tearfully trying to do it all, all the time. Thank you for sharing your journey and your wisdom.
So glad you found Assume Love, Cheryl! Welcome and best of luck to you and your partner as you deal with this disease.
my husband has ITP, Chronic Limpositic Leukemia, severe depression and degenerative arthritis. A Vietman Vet too. It is often a great chore to work thru the numerous problems he has.
I imagine it must be quite the challenge for both of you, Rebecca.
What should one feel when they’re in a relationship and both are injured in some way or another? Currently I have a lot going on, RA, gastroparesis, t1diabetes are my top but I’m dealing with several musculoskeletal issues too. My other has lumbar and sacral issues as well as a torn meniscus. He doesn’t seek treatment. Complains about his teeth fillings falling out til I make his appointment for him. I don’t want things to be over between us but I wonder how much I can deal with. Im tired of playing mom
Meghan, this is a familiar trap for a lot of women. Mom seems to be in our blood, but it’s a really bad role to ever play with our husbands. Playing the hero is in their blood.
Playing Mom to someone who doesn’t want a mom and doesn’t feel the same about his mom as his wife isn’t being helpful. If it’s irritating to you as well, stop doing it and focus on your own health and your relationship. Find things other than health issues to discuss. Celebrate his achievements and good news — and yours — together. Visit new places. Try new things.
When it will make you feel great — any only then — do nice things for your husband that might relieve some of his health woes. Instead of nagging or making an appointment, ask if he’d like you to make one when he mentions his teeth. Leave him in charge of his health, even if he doesn’t do much better with it than a 14-year-old would.
Then try asking him for help. Men like to be asked for help. It cuts out the work of figuring out what you might like (a skill that seems to be estrogen-related) and lets him feel good about himself for helping you.
Sometime down the road, after the mommy role is long gone, tell him your fears, the ones that led you to the mommy role in the first place. Tell him how you fear his neglect of health issues will affect you. Tell him your prognosis will likely require more help with lifting and walking, and you’re afraid he won’t be able to help then if you’re both crippled. Tell him you worry about the financial downside of neglected dental work hitting after you two lose one or both incomes. But don’t tell him how to fix either of these. Tell him your fears and that you’re trying to think of ways to prevent these outcomes and let it go.
He may fear dental work or surgery on his knee or back, but bravely enduring it to protect his wife might be worth it to him. Or he might be neglecting his health because he already has ways in mind to deal with the fallout, which he could share with you if he felt safe from criticism for making his own health choices. Feeling like a hero usually beats feeling like a patient to most men. And it’s a whole lot more romantic and sexy than feeling like a disobedient child.
Hello, it’s 3am here, so please excuse any incoherent sentences.
I woke up in the middle of the night so, so so ANGRY that I had to leave the bed. Eventually I started doing searches and came across this blog and thought “why not?” and started to write.
Background: I have been dating a woman for 4+ years and we are engaged, slated to be married in 3 months. about 2 years ago, she started having health problems. First migraines, then vertigo, finally ‘settling’ with Rheumatoid Arthritis (RA).
I think the original mention in the blog about not being able to do anything about the other persons pain led me to write here.
I am struggling with a lot of things here, and the constant war in my head is the fact that my needs are not being met, but those are nothing compared to the pain that she is going through every day. Sometimes it makes me cry thinking about all the pain she is going through.
Tonight though, I can’t get around selfish thoughts and I’m just angry. Early on in relationship, it came out that she probably doesn’t want to have kids and I had to make the decision that I wanted to stay with her regardless. Part of that decision was that our relationship fulfilled the rest of the needs that I found important (in this case I think its obvious that is referring to intimacy/sex.)
RA makes this impossible. There is no sex, no passion, last night she really explained to me that she doesn’t even like to be turned on anymore, in fear of that leading to pain. So touch in any sexual nature is out. [sorry if this is coming across as whining]
I woke up this night just so angry that there is nothing to be done. I have to learn to be okay with not having any of those things anymore if I want to still be with her (which I do). And the idea of going through my life just relegated to masturbation at the privacy of my computer to have some sort of sexual release makes me so mad (and sad).
We have started seeing a therapist together but I don’t know how it will help. She (my fiance) seems to just go because I asked (she sees her own therapist) but seems be very resolute that this is the way it has to be. To protect her body from pain. I get it… and I don’t get it. It’s very hard to hear that my touch always causes pain and doesn’t excite her any more. I don’t even have that ability any more.
So I went to bed sad, knowing that I’ll be okay in the morning. Ready to take care of all the chores and take care of her. But tonight I woke up at 3am wide awake and thinking about all of this. Hyper-thoughts running through my brain, can’t sleep. Probably going to do some exercises just to tire myself out.
I sense that I’m starting to ramble so I’ll finish up. I feel so resigned. I’m going to marry the woman I love, but I’m losing more and more things that I found important to me in a relationship. This is me being selfish. She still fulfills other needs [caring, interest in my life, conversation, her touch on me] but right now I’m thinking about all the sacrifices I’m making (no kids, no sex, no passion, all chores on me).
But these don’t matter. What she’s going through (every day of pain/exhaustion) is 100x worse. So I have to learn to let it go. Tonight was just a hard time doing that.
I appreciate your blog post, thanks for taking the time to read mine.
My heart goes out to both of you, Adam. While things may be a lot worse for the person with such a disease, it also hurts anyone who loves that person a LOT.
Autoimmune diseases fluctuate over time. There will be better days than the ones you’re going through now. And unless she gets her tubes tied, you might just find yourselves surprised to become parents.
My first husband and I had also decided not to add any children to this stressful lifestyle. I had an IUD to prevent pregnancy. Four years after we married and six weeks after he started on his PhD and I took over supporting the two of us with a high stress job that involved a lot of travel, he felt healthy enough for sex for the first time in six months.
It took me two months of nausea and no periods to realize I needed to go see a doctor: a gastroenterologist, because I was certain it was an ulcer.
He made me get a pregnancy test. Removing the IUD was supposed to have a 50% probability of ending the pregnancy (something we discovered only after confirming we both were ready to be parents now in spite of the challenges), but the darn thing refused to budge. The string just snapped off.
Everything just sort of fell in place to have a child and find others to help us care for him through five years of grad school and consulting work. Our son is now 39 and married with kids.
But because you’re getting married, I want to tell you that one of the most important skills you can develop is Finding Third Alternatives. Most couples are lucky enough to learn it on things like furniture selection or deciding which way the toilet paper goes or what to do with wet towels before they need to deal with things like losing libido to the fear of pain.
When you start thinking those awful thoughts in the middle of the night — and whenever you’re unpleasantly surprised by any choice or request your wife makes — try to remember that the first two alternatives that come to your minds are just two of many.
If you disagree on those first two, the trick to finding one you both like at least as much as one of those two is to get clear on what result you’re each seeking. She doesn’t want to do without sex. She wants to avoid pain. Fear of pain (fear of anything) is a libido-killer.
Some people with RA have sex in a warm shower or in a hot tub. Some schedule it for the time of day when the pain is least, rather than the time when the other partner’s libido is already turned on.
Some stick to mutual or one-way masturbation when the pain is bad.
Some track the calendar, because autoimmune diseases seem to have seasonal fluctuations, and they schedule a romantic vacation on a warm beach for one of the best weeks.
Some build a bed full of wonderful, supportive, cushiony pillows that make cuddling or intercourse more enjoyable. Some skimp on rent or house-buying to afford furniture that makes sex — either one-way or two-way — pain-free.
Some make a game out of tracking which parts like to be touched which way, mapping it on a full-size outline on paper of each partner’s body. Spreading this out over 12 months or longer means you always stop when anything hurts and you later repeat any touch that felt good or that might have been done a little differently, until you master the touches that keep you two connected.
I would also suggest that you, in need of far more touch than your wife, should find a good (and legit) massage therapist and budget for weekly visits. The more relaxed your body feels, the better you’ll be able to be gentle with your wife’s pain and fear. And you’ll likely have fewer middle of the night rages at the unfairness of disease, too.
Sounds like she’s lucky to have found you, Adam. I wish you both a full and happy life together, even if it’s not the one you imagined before you met someone so deserving of your love.
Good to see ur blog where i got to know much,
I am a 26 year old dentist, recently diagnosed with OVERLAP SYNDROME, consisting of RA and Crest syndrome, though i got to know about it early so the pains are fine till i am taking the medications, as i am Anti-SSA positive about which my rheumatologist told me yesterday that they can cross placenta and can cause heart block in the fetus, this was the most worst thing for me about my disease, i was fine with everything but not this, the guy i am getting married to is OK with all but what about this thing?
I dont know but i am very much confused and worried about how i am going to make it further, as i have to do much in my life i have to move abroad i want to study more i dont know how would i do that with the situation i came across.. I am only 26 right now, is this disease going to worsen afterwards? Is it going to affect my studies? And my marital life? Much tensed
Sana, I am so sorry to hear of your diagnosis. Autoimmune diseases are really tough ones to deal with. And knowing the drugs can affect a fetus leaves the two of you with some difficult decisions to make.
Will it affect your marital life? Probably yes, but it could be either a positive affect or a negative one. If you’re marrying someone strong enough to share the burden of this disease, you two could develop a much deeper and stronger relationship a lot faster than other couples.
Will it affect your studies? Perhaps, if you decide your best move is to become a mother before you continues your studies. But my husband and I were in grad school throughout our son’s infancy, so I can tell you it’s possible. I also worked during that time and traveled quite a bit for work. The benefit was that my husband was a hands-on, involved father before his autoimmune disease took his life, and our son (and our son’s children) benefited a lot from this. Or you might decide not to become parents, giving you lots of extra time, energy, and money for education.
Will moving abroad be a problem? Depends on the health system where you’re headed. It could be a real benefit if you’re in the US now and going somewhere that treats chronic autoimmune conditions as the natural occurrences they are.
In any case, pharmaceutical research into treatments for autoimmune diseases is going hot and heavy now. Odds are that your circumstances are going to change for the better over the years of your marriage, maybe several times. And at times they’ll likely worsen. You two might want to attend some marriage education classes so you know how to deal with problems between you when they arise.
Your life is going to be different than you expected. But different doesn’t necessarily mean worse, unless you continue to expect (and rail against) the life you imagined would be yours.
Perhaps you could ask your rheumatologist to introduce you to couples who are handling autoimmune diseases well, so you can learn from each other as you move into married life.
I’m so glad I found these posts. I just met a lovely, sweet guy who has an autoimmune. So I am trying to learn about it. In fact, we are not even dating yet — we only met at a conference and somehow spent every evening together. We were forming a clear connection. It was only 3 days that were busy and went by so fast, then the last day, he tried all of a sudden to tell me he had an autoimmune. I guess he was trying to warn me. It was over a hurried lunch, as I had to rush off to give a talk and then was leaving. Now we are far away and only texting a little, which is a terrible way to learn more about what he deals with. Can anyone advise so that I don’t put my foot in my mouth? Thank you!