How do I support my SO with MS?

August 15, 2006 2:13 PM

I'm in the early stages of a new relationship with a man who has MS. He is having a hard time dealing with his illness and is incredibly depressed. How can I be supportive to without be patronizing or overbearing?

Recently, I reconnected with a friend I had not seen in 6 years, and we have started dating. In the interim, he was diagnosed with multiple sclerosis - about 2 years ago.

His experiences so far have been less than good. His S.O. at the time of his diagnosis broke up with him because she couldn't handle it. He lost a job (retail) about 9 months ago because he had an episode and spent two weeks in bed, and hasn't worked since. He lives with his father, who seems to think his son is not sick - just lazy. His insurance will not cover the cost of drug therapy, and his father's income means he cannot get subsidized Copaxone (though his father makes little to no contribution to his living expenses).

It's been difficult, because he is determined that I not worry about him. After a recent doctor's appointment, he fell into a deep depression and got blazing drunk. He told me that I shouldn't waste my time with him, that I deserved better than to tie myself to him, that all he would do is drag me down. Afterwards he didn't remember what he said, but I did.

I've been reading up on MS, learning what I need to know. I ask him questions or make suggestions: Has he looked into Medicare? What about working in a call center where he wouldn't have to be on his feet? Maybe he shoudl look into going back to school? How is he feeling today? Slowly he has opened up to me, but my suggstions a generally brushed off. He seems to have no hope of ever leading a "normal" life.

I really care about this man. I can see myself spending the rest of my life with him. But at the same time I want to help him. He's done counseling and anitdepressants in the past, and he's reluctant to go down that road again. What can I do to help him? I don't want it to seem like I'm nagging him, but at the same time I see so much potential in him - so many things he could do and accomplish. How do I make it clear that I'm not disappointed in him as he is now (he tends to jump to that conclusion based on past experiences) - that honestly I love him just the way he is - but that there's so much more he can do?

posted by golden_lady to health & fitness (8 comments total)

How do I make it clear that I'm not disappointed in him as he is now (he tends to jump to that conclusion based on past experiences) - that honestly I love him just the way he is - but that there's so much more he can do?

The only way to do this is to tell him with words and show him with actions. You can't make him believe something he doesn't want to believe. Similarly, I've also learned the hard way that you often can't help people in these kinds of situations. They have to make a decision for themselves about what they want to do with their life and how they want to live it. It's probably one of the more frustrating situations to be in in life -- to see someone with tons of potential and promise that can't seem to recognize it and/or take advantage of it. No matter how much you care about this person, you're not the one that can make the decision about becoming an active and happy person again -- one that recognizes that it is possible to still have happiness and fulfillment even in the face of a terrifying and debilitating disease. Unfortunately, only he can do that. You can make the decision to stand by him and support him as long as possible, to encourage him, etc, but you can't make him regain hope. I truly hope he does.
posted by theantikitty at 2:39 PM on August 15, 2006

Agree w/previous post. If he's Web literate, make sure he's familiar w/sites like thisisms.org/com? Lots of community sites out there that can offer quasi-therapy support/encouragement. Generally, the younger someone is when they're diagnosed w/a chronic problem, the more resilient, but no hard/fast rules. If you understand/can-live-with the drinking -- which may/may-not be a problem unto itself -- then per previous poster, being explicit w/him in written and spoken words, repeatedly, that you believe in him, that you want to help him through the hard times as a partner, and that you understand how fragile life is -- that he has MS today; but next year there may be a cure; and the next year you may be in a car accident and need his support. That's what committed relationships are about. Repeat it over and over until he believes you. As you prob. know, MS research/trx is accelerating and cures may be just 4-10 yrs. out. Also, depression/anxiety can be related to MS. It's vital that his neuro refer to a psychiatrist and that he advocate for top-notch care. You might speak to an atty. or non-profit legal counselor about his Copaxone situation. If he doesn't have the income he should qualify somehow -- even if he has to file his own taxes. Best wishes.
posted by pallen123 at 4:33 PM on August 15, 2006

So, I have a taboo and difficult-to-manage condition, chronic fatigue syndrome, and these days I'm a housewife. (That makes me twice lazy to some folks. Oh, the joy.) If they were delivered regularly, your suggestions would probably make me go cross-eyed with annoyance.

My husband has the right idea. It took me a while to fully believe it, but he has managed to convince me that living a "normal life" is not really such a magical thing, and that he absolutely does support and respect me. He could not have done that if he were always pestering me to stretch myself further, and he didn't. (If anything, he pesters me to be reasonable.) What he has done to help me stretch myself is this: he's waited until I expressed interest in doing something, and then volunteered specific actions to help me do it.

It would be both easy and reasonable to read your expression of concern as a barrage of suggestions that boil down to, "I'm the expert on what you can do, and you're living all wrong." He's not "jumping to conclusions"; he's interpreting your actions. If you don't want it to seem like you're nagging him, you have to stop nagging him!

You cannot simultaneously support emotionally a person with a significant physical impairment and wish for him to lead a "normal life". Wipe that phrase right out of your brain. Every person with a disability is, in some way, leading an extraordinary life; elevating the importance of "normality" is an impediment to living a life that is good.

He has an entire culture bugging him to get up, get going, do something, cover up, act normal. You don't have to fill that role. His baggage will more than take care of it. He knows now that you're willing to help him make a plan. When it's time for him to make that plan, he'll come to you, if you've shown that you respect and support him. You can show that now by backing off.

For yourself, consider putting aside your MS books and reading up on disability rights, ableism, and the social model of disability. You may not agree with everything that the disability activists have to say (heck, I don't) but it may give you a new outlook on the place of disabled people in the world. A medical understanding isn't enough; you also need a philosophical understanding.
posted by sculpin at 4:33 PM on August 15, 2006 [1 favorite has favorites]

Give him the box sets of 'The West Wing'; The President character has MS also.
posted by oxford blue at 4:53 PM on August 15, 2006

I'm sorry to hear about his father's lack of support. He needs to get on medication somehow. Copaxone is good stuff, and we're fortunate that with it subsidised through the Australian health system we pay about $28.00 a month for it. Is there some way of finding it in Canada? I know I've read about drugs being cheaper over the U.S. border but I don't know much about it. Also consider other Anti-MS drugs. I read recently about an oral MS treatment which promises to be more effective than copaxone, I'll see if I can dig up the article.

My partner was diagnosed with MS a year or so before we met. On her worst episodes she's had steroid treatment, did your partner get any treatment while he was suffering a two week attack?

Also, consider exercise as it's known to boost people's mood and overall health. My partner entered a study which was to do with weight training and its effect on people with MS. She has since got seriously into training, and is seriously pushing for competing in the next Commonwealth games. Since she started training she has had less attacks, and I am sure the extra muscle mass helps her.

MS is one of those diseases it's easy to handle badly from an external perspective because the person suffering it usually looks just fine, even though they can't stand up.

I wish you all the best.
posted by tomble at 6:53 PM on August 15, 2006

I worked for a company that makes an MS drug. We did everything we could to ensure that patients that couldn't afford treatment received it in some way. I don't know the legal ramifications of telling you which company it is, so I'll just say it's in Cambridge, Massachusetts, and you should call their customer service hotline. I've met, and heard of people with astounding results from the appropriate treatment. Another way to get free treatment is to ask your doctor to get you into a clinical trial. People with MS can live long, quality lives. Sorry for sounding like an advertisement, I honestly don't mean to.
posted by WaterSprite at 7:35 PM on August 15, 2006

i don't know much about it, but there is a not-for-profit agency called NTI that apparently helps people get work-at-home, customer service jobs if they are disabled.

http://www.nticentral.org/

i've looked at their website a bit and they seem legit and to have a good mission.

in terms of paying for meds, it is often difficult for people to obtain subsidy benefits if they live with someone who has a good income. sometimes they can get around this by renting a room from the person they live with. they have to have some kind of income to demonstrate they can pay rent, however minimal, and it helps to have a lease, get receipts for rent checks, etc. i've seen this work in two different cases, one in Michigan and one in Ohio. however, neither case involved living with a family member. i don't know if that would make a difference.

i hope this helps, and wish you both all the best.
posted by lisaj32 at 8:45 PM on August 15, 2006

(This has turned into quite a screed, but I have a lot of experience with MS specifically and with relationships and illness more generally. I hope some of this is helpful.)

A good friend of mine who is living with MS gets a great deal of support from the National MS Society. The chapter in DC is very good, and the Maryland chapter (I assume from your profile that he also lives in Baltimore) is in Owings Mills. They hold support groups, publish materials on living with MS, and offer legal advice to people trying to navigate insurance coverage and employment situations. I would highly recommend that he get himself on their mailing list and think about attending some groups or meetings. Just being around people who are going through the same situation and seeing how they're coping with it will, I think, help make him feel less overwhelmed and alone. They may also be able to help him get access to medical care, as I'm sure they've dealt with these kinds of situations before.

As for what you can do, it sounds like you really have his best interests at heart, and you clearly care about him very much, but you can't force this. He's dealing with something huge, and he has a lot of feelings about it that are overwhelming. He needs to process that in his own way, and that may mean that for a while -- possibly a long while -- he won't be living up to the potential you see in him. Of course his life would be better if he could stop being depressed and angry and start doing the things you know he can do, but feelings don't work that way. He can't just turn them off. The best thing that you can do to support him is to let him feel the way that he feels and let him deal with his illness in his own way, on his own schedule.

Asking questions is great, but the examples you gave weren't really questions; they were mostly suggestions with question marks at the ends. He knows that those options are open to him, but you need to let him get to them in his own time, in his own way. Ask him what you can do to help, and then listen to the answer. It may very well be that the answer is "go out to dinner with me to take my mind off my depressing life," or "leave me alone for a few days because I'm in a bad mood," and those things may not feel to you like they're helping him, but if you can show him that you're really hearing him and respecting his feelings, I think he'll be a lot more willing to confide in you and ask you for help down the line if he needs it. And that means no more suggestions unless he specifically asks you for advice on jobs or school or medical care.

You can be the person in his life who doesn't see him as sick, the person who treats him like a competent adult when he feels helpless in so many other ways. In order to do that, you need to stop telling him that he can overcome it and suggesting things he should be doing. Instead, you need to show him that you have confidence in him by trusting him to handle it and backing off unless he asks you for help. You prove to him that he can have a normal life by treating him like a normal adult, like someone who can and will get through this on his own. This is an incredibly difficult thing for a loving partner to do, but in my experience, it's the best thing you can do for him.

Not to be completely depressing, but a lot of relationships, even long-term ones where people are madly in love, don't survive this sort of thing. You may find that you can't handle being with someone who is grieving the loss of his health and is depressed and unmotivated for a long time. He may decide that he feels too guilty for dragging you down with him or that he needs to deal with this on his own. But the best chance for the survival of your relationship lies in showing him that you know he can take care of himself and then waiting for him to decide for himself how he wants to handle it. Much as you want to fix his life because you want him to be happy, you can't be his therapist and his legal advocate and his career counselor. You can only be his partner and provide him with a safe place to feel however he feels, even if that's drunk and depressed and hopeless right now. Most people in his situation do eventually feel better emotionally, and if you can be there for him without pressuring him to move faster than he feels ready to, I think that your relationship can weather this until he's ready to face the next steps.
posted by Amy Phillips at 8:59 AM on August 16, 2006