For a little background, me and my wife got married in July 2020. This December will be 10 years since we officially started dating. It’s been a wonderful journey. However, back in late 2021 we got our Covid booster shots – and then on the same day she also contracted Covid (so double whammy on her immune system). A couple weeks later she contracted Guillain-Barré syndrome and ended up in the hospital, she had lost feeling and strength in her extremities. She was “cured” with IVIG, and sent home. Gradually she regained strength and started walking, doing yoga, and some light Pilates again, and started working half-time from home. Things were looking up.
Well – from that point, it didn’t exactly get better, in fact many things have just gotten worse. Now she has peripheral neuropathy (burning pain in the extremities where she she is also still numb), and she seems to have some form of chronic fatigue syndrome (M.E.). This is all on top of other health issues like bad allergies, abdominal migraines, food intolerances, etc. The main problem is the fatigue, where little things can trigger a flare up. Doctors appointment? Laid out on the couch all day. We go out for some casual drinks with friends? Can’t get out of bed the next day. Her work is having a 3-day in-person meeting? She’s destroyed mentally, physically, and emotionally for multiple days. Despite working half time from home for a year, she’s still only able to still work half time from home. She’s went from 4 hours a day to about 5 hours.
I feel so bad for her, and I try to do everything I can to help her, but I also work a lot, leaving the house at 5am getting home at 5pm. Then I try to get a little workout in, cook and clean dinner, maybe get a quick 30 minutes on the couch with my wife and then have to start showering/ getting ready for bed. Weekends are filled with cleaning chores/ errands/ shopping. God forbid any friends are having a gathering so we can be a little social because it’s completely draining on my wife – which in turn is taxing on me too, time and energy. I feel like I have no time for myself – I like to go to a drawing class on Wednesdays, but this week I get a text halfway through from my wife saying that she’s overwhelmed. So my small amount of me-time I get once a week now gets interrupted by my wife’s needs, makes me feel guilty for leaving her and that I’m not even allowed to have that.
Sex frequency has been a point of contention since before she got sick and before we got married. Like many couples, when we were younger/ in college we would have sex multiple times a week. As time went on we settled on once a weekend – typically planned, and not if she’s on her period, so averages 3x per month, rarely more, occasionally less. This is less than I would like, but I had made my peace with it. I don’t dare bring up trying to do it more often, because as it is now, I feel like she would prefer just to never have sex. Whenever I do bring it up, it’s like that hand-slamming-the-button meme, and the button just says “I’m tired” or “I feel like shit”. I don’t fault her entirely, obviously because of her illness, but the problem I see is that she DOES have energy for things at times. She has the energy to go to Pilates, to clean the house, or to go out with friends. But that leaves nothing in her tank for our sex life, it’s like on her list of priorities for her energy use, sex is the last thing. If her energy reservoirs are empty, it falls off her list. If I bring this up, she takes it as criticism, she already feels overwhelmed and makes her feel like “jumping off a bridge”. She also never has self-pleasured, despite my encouragement, so I just don’t know if the enjoyment aspect on her end is there. I feel like an absolute jerk for even feeling like my needs aren’t being met. It’s like my brain is screaming “why don’t you understand?! She has a chronic illlness!!!” Masturbation helps, but it’s like eating a cupcake for dinner – sweet but entirely unfulfilling.
I can’t help but feel like “this isn’t how this stage of my life is supposed to be”. We are in our young 30s, I can’t even think about ever bringing kids into this situation, financials aside – despite that being a hope of mine. I feel like my wife is just shriveling away, and that each week is just a monumental task to get through. Her condition hasn’t really improved, maybe only slightly, since getting out of the hospital, seems that some things are only getting worse. She’s plagued with having to constantly go to doctors/ specialists/ neurologists/etc appointments which is draining, i try to go with her when i can. I guess I just have to accept – this is my life now.
Anyways, I guess I’m just seeking advice from those who either have, or are married to those who have, a chronic debilitating illness. How do you maintain your sense of self and give your spouse agency? How do you manage all of the needs of the household? How do keep yourself and your spouse happy despite the challenges? Sex life tips?
Thank you
Tl;Dr: wife has chronic fatigue issues, I want to keep it all together but it’s very challenging. Seeking advice from those who either have a chronic illness or are married to someone with a chronic illness.
5 comments
Caregiver burnout is a real thing that happens. Sit her down, explain that you’re overwhelmed and need some time/space to yourself to recharge. If she doesn’t get it, that’s on her.
Consider that it’s likely this is what the rest of your life will look like. The circumstances and conditions have changed drastically since you made your vows.
Hi bud, sorry you have to experience this. I’m a spouse with issues. Been married 39 years now. Had to get the covid series of shots in August of 2021 just to keep my job! The irony of it, was when I went to get them i looked at my family and just said flatly, guess ill have to take one for the team. Boy did I! I had multiple reactions both shots, ranging from serious fatigue, multiple bouts of flue symptoms, severely, over a 4 hour time frame. I was literally under winter blankets in August with my teeth chattering. Suffered from severe abdominal pains, infamed bowel syndrome, severe uncontrollable diarrhea to the point I’ve soiled myself. Yet still had covid twice! Now as of April of this year I’ve developed lymphoma cancer! I’ve developed bad anxiety/panick attacks. I feel ashamed at times. Why? Because I know that my wife would feel I was faking things just to not have to go to work! Absurd right? Yet there have been so many days i just got nothing in the tank! Because of the cancer now, as well as the financial issues incurred by time lost at work, I retired 2 years short of 20 years, sold our home and we moved from the west coast to Tennessee to be near my daughter for the last part of my life. To make happy memories with her, her fiancée and his family with whatever time I have left. I’ve went through 19 rounds of radiation treatments on my face and one on my fore arm to kill off tumors that had grown. Suffered pain I didn’t knew existed in my mouth due to radiation burns, lost almost 20 lbs now because of the fact I couldn’t hardly eat. This morning I had a CT scan done. Halloween I have a new pet scan done. Yes, my cancer is back. I feel so lost and alone inside, yet on the outside I have to be strong for the family, have to work still cancer or not. On top of it all, in August of 2022 I was finally diagnosed with bipolar 1 condition! After over 3/4 of my life, I now find out I have mental illness? Fuck man, I rage inside and scream! For days this happens. Why am I the one with all this shit happening? An illness that will probably end my life sooner than later! Why am I the one that has to carry everyone on my shoulders? Walk softly or I may upset them cuz I’m emotionally and physically hurting and they don’t need that! Why must I now comfort and care for my wife because SHE’S depressed now? Hell she’s not the one who has to lay on a table and take trips back and forth through a machine, praying that they find nothing abnormal! Being poked and prodded, blood draw after blood draw, lay on a table and have focused radiation done on my face to kill a huge tumor and having my mouth suffer radiation burns and not be able to eat food! I mowed through a bottle of 180 10 mlg oxicotin, in less than 3 weeks because of the severe pain, 16 bottles of 2% lidocaine solution in my mouth to numb it just to sleep for an hour maybe 2! Sorry my man I’m on the opposite side than you. Why is there no empathy for me? What im enduring…again? As I stated im 63, a very vigorous 63. Most people guess I’m in my early 50’s. My sex drive has gone through the roof now. I’ve had ED now for 4 years, yet last night I was able to get fully functional without meds and finally make love to my wife again! She doesn’t understand why my drive is through the roof and I dont think she will! I may be dying and I have a supremely strong “NEED” to bond with her, to feel alive while I can. Im so sorry you have to cope with this issue with the wife. Try and cut her some slack when you can. Alot is blowing through her mind and none of it will make sense to you. Yes you’re still the same man, that same one who does have desires and needs. Needs that will probably go unmet if you’re not proactive with her. Get marriage counceling/therapy for couples with her. Gives you both a chance to let these things out with a moderator. It is probably the only way you can reach her without making her feel defensive and that your nothing but a selfish little deviant! Best wishes.
So sorry. Yes, I’m currently going through something too. My partner got blood clots (DVT) from Covid in August which resulted in a pulmonary embolism. We had 14 days of hospitalization in August and he missed 4 weeks of work. I missed 3. For me, the worst part is anxiety/worry/fear. I’m just trying to put one foot in front of the other at this point. I feel that this intense period of the illness will pass. The doctor’s believe that he will recover. It’s stressfull though. I’m in survival mode for sure, barely getting things done at work, journaling a lot and trying to hang in here.
My best friend has a lot of chronic issues like your wife has (5 autoimmune diseases) and deals with a lot of fatigue. She has had the best results and improvements in her life from going to a funtional medicine doctor. It’s pricy (in the US, not usually covered by insurance) but it has been worth it to her and I have seen a lot of improvement in her quality of life.
Wishing you the best , I hope your wife gets some relief from her symptoms and you two can get on with your lives.
My wife developed ulcerative colitis last year. She was in an out of the hospital 7 times and in a 5 or 6 month period lost about 45% of her body weight. I did my best to take care of her while also caring for our daughter but it took a big toll on my mental health, especially since I’ve been thinking of divorce for a few years before all this happened. She’s much better now and back to the point where she can go back to work and do just about everything else she could do before, but it also involved a surgery that permanently altered her body. The whole ordeal did not help our marriage at all but now that she’s better I was finally able to get her into couples therapy with me so we can try to figure some things out.
To be honest and this is complete armchair diagnosis but it sounds a bit like she uses her ailments to get out of things she doesn’t want to do.
Also to avoid discussing anything related to you or your needs. Feels like the movie Misery to me.