Spouse with chronic illness - support for me.
October 31, 2012 11:39 AM   Subscribe

I'm trying to find some kind of online support, such as a forum, for people whose SOs have chronic health problems. When googling for this, all I find are forums for people who are caretakers of their ill SOs. My husband can take care of himself for the most part, but his illness has a significant impact on our marriage. I'm trying to find others in similar situations. Any ideas? Many thanks in advance.
posted by michellenoel to Human Relations (15 answers total) 8 users marked this as a favorite
My husband can take care of himself for the most part

Try a couple of the caretaker forums. I bet you'll be surprised where other people are drawing the line on 'caretaker'. Sure some people are bathing and feeding their SO's but a lot of folks are taking care of 'all the school work for kids' or 'almost all the housework' or 'all the finances' even driving someone everywhere for errands and doctors visits is being a 'caretaker'.

There are a lot of diseases and conditions out there but many of the emotional, financial, physical, sexual and spiritual impacts on their partners are similar.
posted by French Fry at 11:47 AM on October 31, 2012

I agree with French Fry, while you don't take care of your husband physically, doing housework, finances, taking care of the kids, etc. is indirectly being a caretaker for him.

I'm not sure if you want ideas from us here, but maybe part of the reason there has been a significant impact on your marriage is because you aren't doing the things he needs help with. Have you sat down and talked about what he would really appreciate you doing for him? Maybe there are things that he currently does for himself that would be easier if you did for him or helped him with.
posted by sgo at 11:51 AM on October 31, 2012

Best answer: wellspouse.org is recommended here quite frequently.
posted by thatone at 11:57 AM on October 31, 2012

Response by poster: Yes, we have talked about what he needs from me and I do those things. He has had his illness for about 15 years. In the end, I do about 90% of the things in our lives that need doing and I work full-time and bring in 90% of our income. He works part-time.

I could write out the whole story here, but it would be long. Let me see if I can put it in a nut shell: Although undiagnosed, I believe he has Chronic Fatigue Syndrome and environmental sensitivity (bright or flashing light and sound). He spends much of his time in the basement when he isn't teaching. You can imagine how this impacts our marriage in a variety of ways.

I'll stop with the replies unless specific questions are asked.
posted by michellenoel at 11:58 AM on October 31, 2012

I hate to be blunt, but does "modifying" the marriage remain as an option?

Undiagnosed, 90% of everything, basement dweller, no signs of improvement - this is not the right trajectory. How much can online support groups really help in fulfilling your daily needs?
posted by Kruger5 at 12:58 PM on October 31, 2012 [4 favorites]

Response by poster: Modifying, although VERY tempting at times, is not an option. I am a Christian and I meant the vows that I took: for better or worse; in sickness and in health. We have been married since 1994 and the illness began about five years in and has grown increasingly worse since then.

Online support groups provide me a place to vent, obtain support, support others, feel truly understood, and can provide ideas for coping as well.

I do thank you and everyone, for the replies.
posted by michellenoel at 1:29 PM on October 31, 2012

I have a chronic illness myself and in researching various forums for that, I've noticed that almost every specific illness forum also has a section for caregivers and/or spouses of people affected with that illness. So, if you can find a forum for Chronic Fatigue Syndrome or other specific conditions you believe affect his health, you likely could find a caregiver section on that forum.
posted by SweetTeaAndABiscuit at 2:52 PM on October 31, 2012

Is there a reason you haven't sought out evaluation and an actual diagnosis? If it's been going on for 15 years with steady decline, I think a diagnosis will lead to you find better resources, not only for your husband (such as disability/SSI, which could help out with income, etc) but for yourself as well (such as local support groups as well as online forums). Good luck.
posted by greta simone at 3:09 PM on October 31, 2012

The first step towards solving a problem is identifying the problem.

posted by oceanjesse at 3:17 PM on October 31, 2012


You are already doing 90% of the things, AND you are a women, which means (statistically speaking) you are the one to make the medical appointments and health decisions in your household. Which isn't always a good thing, but: what is preventing you from scheduling a doctor's appointment for him? You're doing it all, almost, and there is a cultural expectation that dudes should go to the doc when their wife tells them to, so take advantage of that.
posted by vivid postcard at 7:05 PM on October 31, 2012

+1 for vivid postcard.

If its been so many years, why there is no doctor's visit. That will give you better solution that searching for online forums and taking suggestions for so-called experts, causing more harm in the long run.

When one in a relationship doesn't take charge, other MUST take over. When I delayed going to the doc for my migraine for 4 years for being too busy at work, DW set up an appointment and took me to the doc.

If there is any social stigma attached behind not going to the doctor, don't worry about it. People will use their ability to gossip no matter what condition you are in, so personally, I don't give a tiny rat's ass.
posted by zaxour at 6:47 AM on November 1, 2012

Response by poster: Thank you again for all of the replies. His condition is undiagnosed, but not for lack of trying. He has been to every kind of doctor since early in his illness and had every kind of test under the sun. They all scratch their heads and don't know what is wrong. He finally, recently, found a doctor who will prescribe him some meds that break a flare long enough for him to teach a class or get through something that he absolutely MUST do himself.
posted by michellenoel at 8:44 AM on November 1, 2012

Have chronic migraines been ruled out, by a migraine specialist? They take lots of forms, are underdiagnosed in men, have multiple forms of light/sound sensitivity, make you exhausted because of a variety of reasons, and do not have to have aura or actual head pain for the migraine to be present.

Hugs to you. That sounds so difficult, in so many ways. I hope you can find some support for yourself, both emotionally and literally. Can you apply for any kind of disability assistance to get a caretaker in a few times a week? Even once a week to do things like dishes and a few loads of laundry?
posted by barnone at 12:11 PM on November 1, 2012

Response by poster: Not entirely ruled out. One doc gave a diagnosis of silent migraines, but none of the (many) meds he prescribed helped and some even made it worse.

I may look into the help you mentioned.

Thank you.
posted by michellenoel at 4:52 PM on November 1, 2012

You might have already gone down this road, but look into getting some disability assistance. I'm not sure about the programs and regulations in your area, but there are often 'case workers' or 'centers' which can help get you started. A bit of energy on that front might give your household either actual help (as in programs which will help) or financial help (which can help you hire household help or simply provide extra financial support). I have no idea if he's eligible, but honestly, it sounds like he should be, and it's worth some effort if you haven't emphatically heard NO from several people.

If the next steps are too opaque -- and they often are, designed so that people will get frustrated or not know how to proceed -- then make your next question here about how to begin the process. Make sure to include your state and general city/county so the answers can be specific and general in nature.

Is he often on a computer? Could he do some home-based work online?
posted by barnone at 8:21 AM on November 2, 2012

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