How do I make plans for the future knowing I have MS?

October 27, 2006 7:19 PM

A few years ago I was diagnosed with MS. Since then, I've grown increasingly confused about how I should plan my future due to the possible future effects of the disease. At this point I've completely lost perspective on the matter, and the more I think about it, the less sure I am of any decision being the correct one. I'm hoping for some objective advice.

I was diagnosed about four years ago. In that time, I haven't had a single symptom. I see a neurologist yearly, and my physical exam is normal, EDSS is 0. My MRIs, however, have shown a few lesions coming and going over the years, and I had a spinal tap that was abnormal in all the expected places, which is where the MS diagnosis comes from. I got pretty educated about things, and to be honest, it didn't really bother me a whole lot until recently. Not having any symptoms and holding on to a vague notion that maybe "they" were wrong really kept me in a state where I didn't think about it too much. But lately I'm thinking about it all the time.

I'm 30 years old, and have accomplished very little compared to what most people have by my age. I'm not married, no children, no career to speak of, and until recently, no college. From highschool on, I'd basically worked to eke out a living, and not really pursued much else. However, since my diagnosis, I've gotten engaged, and start taking college classes to help me rectify the career issues. But the more my future starts to shape up, the more I feel constantly worried and upset about whether I'm making the right choices. It basically boils down to trying to negotiate my life with the possibility/probability of becoming disabled hanging over my head. Of course, the nature of MS is that it's impossible for me to know how likely it is to happen to me, how long I have until it happens, if it happens at all.

My biggest worry at the moment is college/career. My work will pay for my college 100% if I attain a degree or certificate in one of a set of pre-approved healthcare fields such as nursing, etc (though I'm not pursuing nursing). None of these really accommodate any disability. Free college is great, and I've already started taking classes. At the same time, I'm knowingly choosing a career that I won't be able to do if I can't walk. I feel like it's my only reasonable hope to go to college, and make decent money, but I don't even know how long I'll be able to work. And I don't know if my employer will feel it's pretty disingenuous of me to get a free ride through school knowing that I knew it's not likely I'll be able to do the job until retirement. It's got me thinking that I shouldn't bother at all, that a career is something that I shouldn't hope for. And other times I think, hey... the other kids in my classes might get hit by a bus in a year or so. They're not having to worry about a choosing a career that accommodates bus trauma. Why should I behave as though I'm disabled before I really am? And then I think, boy, when I am disabled, I'll wish to god that I'd planned ahead for it. I go round and round with it.

And of course, whether to have children is an even bigger, though less immediate issue. I always wanted to have children, it's always seemed like one of the most important things one could do in their life. But again, now I'm not sure whether I should bother. I don't know how long I'd be able to take care of them, and while MS isn't strictly inheritable, there's an increased chance that my first degree relatives will have MS as well, and I'd feel awful of course, if my children ended up with it. I wonder how my children will feel towards me, having had them knowing I had MS. But then again, I don't want to reach the end of my life and regret not having any.

Honestly, I feel like if I'd gotten all this out of the way when I was 20 like I was supposed to, I wouldn't have had to worry about these things. I could have gone to college and had babies and had a clean conscience. Now it seems like no matter what I do, my conscience cannot be clean.

Unfortunately, something like this isolates you. I can't ever tell my coworkers, I don't feel comfortable telling any new acquaintances since I was diagnosed, and the friends who know never speak of it or ask about it, probably stemming from basically not knowing what to say. I don't blame them, I know it's uncomfortable for them too. Of my family, some are so extremely upset by the subject that I don't even like to talk to them about it anymore, because I don't like upsetting them. The rest generally don't know what to say. I've been to MS boards, and really, it's hard to whine to people who are actually experiencing the symptoms that I'm worried about. And I know that any of them would love to trade places with me, but still my problem is real and valid to me, if not exactly tremendous in comparison to others, if that makes sense. I suppose a councellor would help, but between school and work, I can't imagine trying to squeeze another thing in right now. I appreciate any input, it would just be great to find out what someone who isn't my mom thinks.

If I've left out anything, I can be reached at [e-mail]

posted by anonymous to health & fitness (17 comments total)

Emailing.
posted by dilettante at 8:00 PM on October 27, 2006

I don't have any personal experience with MS. However, I have a lot of experience - first hand and through acquaintances - with disability.

Go for the career. Doesn't really matter what it is, although you may want to consider developing skills that will keep you paid if and when you become impaired. Don't necessarily drop the nursing idea, but maybe take electives in writing or other general skills that will serve you well no matter where you go. Maybe consider one of the many careers that would put you in a position to support healthcare providers from an administrative position? On the other hand, if you find a major or concentration that you like that isn't nursing, you could go for that, too.

The point here is that you can continue to live a normal life, even when the MS kicks in and you are limited in one way or another, so you shouldn't write yourself off. What you're going through right now is very common for people who acquire their disabilities, and you are in the awkward situation of knowing you will have a disability, but not yet having any idea of how it will impact you. Even once it does "hit", however, there will likely be a period where you grieve for what you feel you've lost. Depending on your college, you may be able to talk to a counselor or psychologist at student health services, or ask your doctor for a recommendation. I know it's hard to fit in between work and school, but it can really pay off - and at student health services in particular, they will understand that you have a busy schedule. Dealing with the psychological impact of a long-term disability is as important as dealing with the physiological one.

One last thing: you say, "it's hard to whine to people who are actually experiencing the symptoms that I'm worried about". But consider that many, or even all, of them were once in your shoes, so they'll know what you're going through right now. And what you're going through is not easy - this is a big adjustment. As you say, it is a real and valid problem. Note also that not everyone would choose to trade with you; I suspect many of the commenters on those boards have made their peace with MS, and are happier having done so, their increased symptoms notwithstanding.

Good luck!
posted by spaceman_spiff at 8:04 PM on October 27, 2006

and you are in the awkward situation of knowing you will have a disability

The weird thing is, s/he can't know that. It isn't always disabling - there are a very small number of so-called benign cases. It's not something anyone would want to count on, though.
posted by dilettante at 8:13 PM on October 27, 2006

Dilettante: true. But the point remains pretty much the same. There is this looming "threat" of disability, but the poster has no way of knowing what the specifics will be. Not that knowing the specifics would help much - knowing that you're going to lose X function doesn't really help you understand what that will mean for your life(style). So the poster is in a psychological position similar to that of someone who has just acquired a disability, but with all the uncertainty of being unable to live with the disability and explore what it means.
posted by spaceman_spiff at 8:31 PM on October 27, 2006

MS is definitely not a guarantee of disability; 75% of MS patients never need a wheelchair (at least according to my out-of-date copy of Multiple Sclerosis)

Obviously, a big problem with MS is the uncertainty, and that can be as difficult to deal with as some physical symptoms, even though there aren't any support forums for that. You've got a lot of life changes happening and you're trying to fit it all into a future that's uncertain. If that's not a recipe for stress and anxiety, I don't know what is.

I asked a friend about her relapsing/remitting MS about 6 years after she was diagnosed and she said, "I've got a husband, two kids, and a dog. MS is the least of my problems." Now, nearly 6 years after that, it's still the case. I think that there are a ton of people out there with MS that we never hear from because it's just not a big deal in their lives. Unfortunately, that means we hear a lot about MS from people who are having significant disabilities, and that tends to skew our idea of how bad MS really is.

So, having said that, you need to try to put those MS doomsday scenarios in perspective and remember that you will very likely be healthy enough to raise children and stay in your career well past the time when your employer will have recouped the costs of your college education.

Don't hide because you're afraid of something you can't be certain will happen. Live it up. Get married. Have kids. And yes, try to consider therapy, not just because you have MS but because you've got mad stress (and sometimes it really helps just to dump that on someone who isn't your mother).
posted by stefanie at 8:51 PM on October 27, 2006

Go for college, go into the career. You have no way of knowing for certain about the diagnosis, and you've spent four years without symptoms. As for having a child, that's a decision for two. Talk it over with your fiance, find out what she thinks about it.

You don't need to feel guilty over a condition that you simply cannot control. It sounds as if you have started to live life now that you worry about how much time you have to do things. Stick with that. If you live to the age of ninety and never experience a symptom, live such that you look back and are proud of what you've done. Likewise, if you can't walk in a year's time, know that you've made the most of the healthy time you've had. On top of that, live to the fullest you can, even if things become more difficult. Disability is not death.

If you let yourself worry about disappointing everyone, you will disappoint yourself to death. You've made good choices so far, it sounds. Get back out there and keep on living!
posted by Saydur at 8:55 PM on October 27, 2006

I won't repeat what everyone else said about MS being unpredictable. I've seen it go both ways in people who are close to me. You can't know.

I will say this: The only disability you have right now is fear.

If you don't go for the career you're just sitting around waiting to die.

And you have to find someone you can talk about your fears (Not your finance or someone you live with) or they will consume you. Or at very least you'll blow them out of proportion like you've been doing. If you don't have a good confidant, find a counselor. If cost is a problem, you should be able to get one through student services.
posted by Ookseer at 9:11 PM on October 27, 2006

First of all, my heart really goes out to you, OP.

I have not had to personally deal with MS or any other physical disability - however, I think that the MS itself isn't what is hurting you so much right now, it's just the fact that you don't know what's going to happen down the road. You may not be able to do your job in the future, but you very well may. Since you're not symptomatic now, if you love the idea of pursuing this career, then go for it. Take the chance. For all you know, you might decide to change career paths in 5-10 years anyway, or decide to be a stay-at-home parent, or go back to school for further education which would allow you to teach.

Your employer is not going to think that it was sneaky of you to take the opportunity, and it's really none of their business anyway. You are going into this with the full intent of doing your best at school and at your career. Your employer is taking a chance on you, but it's a chance they know they are taking. For all they know, you could quit halfway through the program, and decide to switch careers. Don't feel a sense of obligation beyond that which you have agreed to.

It kind of sounds to me like things are starting to go really well for you in life, and now you're waiting for the other shoe to drop. I can see how having the possibility of MS symptoms looming over you could cast a shadow on all of the good things that are happening to you. But because you don't know what's going to happen, just embrace the here & now. Talk about your dreams & goals with your significant other, and don't count things out just because of what might happen. As you said, anyone can get hit by a bus tomorrow. No one knows what the future holds.

Also, I feel like I suggest this a lot, but I strongly suggest contacting a therapist to talk to about these issues. People with a diagnosis of an illness or disability are prone to depression, and maybe having someone experienced with these situations can help you work through your feelings and help you learn to cope with this unknown that is putting a damper on what should be a really great time in your life.
posted by tastybrains at 9:16 PM on October 27, 2006

Honestly, I feel like if I'd gotten all this out of the way when I was 20 like I was supposed to, I wouldn't have had to worry about these things. I could have gone to college and had babies and had a clean conscience.

Just to put things into perspective, I have a very good friend, 32, two children aged 7 and 5 and a husband she has been in relationship with since the age of 15.

She was diagnosed with MS two or three years ago, and now suffers severe bouts of depression due to the fact that in 10 years she'll be in a wheelchair and will no longer be able to care for her children. This is probably not likely, as her symptoms are mild, but once the depression hits so do all the negative thoughts.

Having known her husband for more than half her life, she laments the fact that the plans they made as 20-somethings (to travel the world, etc., etc.) are no longer viable due to her illness. She's terrified that her husband can no longer handle the burden of caring for her and will eventually leave her. Both of them were very active teens and 20-somethings — she was a champion swimmer and they both love to hike and camp. They can't do any of these things now because even spending a day with her children at Disneyworld left her so exhausted she practically couldn't function for a week later. She says that exercise helps the depression, but when you're depressed it's difficult to work up the motivation to work out.

Things that help her — vitamin D, very moderate exercise (overdoing it will really do you in), lots of time in the sun. Did you know that the majority of MS cases occur in rainy climate? My friend was born in Oregan, so there you go.

Also, you say you don't suffer from any symptoms yet, but it sounds like you at least suffer from moderate depression. There isn't a lot of information yet about whether depression is directly related to MS or whether it's a secondary side-effect (according to what my friend tells me — IANAExpert) but I say get yourself to a counselor if these feelings continue.

Lastly, I am a perfectly healthy 26-year-old, and I often feel like I'm not doing anything with my life either, so don't be so hard on yourself.
posted by Brittanie at 9:22 PM on October 27, 2006

First of all, LOTS of people reach 30 without a spouse or kids or career. I think most people I know are in that situation.

Second:
Go for college. It will open doors for you in the future, whatever happens. Get educated so that you are qualified to support yourself in "head jobs" -- writing or other types of jobs you can do from a wheelchair or even from home. Also, get educated because it's your life, and an education is a wonderful thing; it expands your horizons, it makes your soul more fully human. Of course you should get educated (unless you hate school, which some people do)!

Go for a career. Very few people's career paths go the way they initially expect anyway, so everyone is taking small steps hoping they'll lead somewhere but not being certain of where. Go for it!

Both of those make sense if you never have symptoms, right? And they also make sense if you start to have symptoms in a couple of years, and the symptoms gradually get worse over ten years. Even in the latter case, by getting educated and career-ambitious, you've laid a better groundwork for your life, your ability to take care of yourself, your flexibility in changing what your work is if the symptoms close one work option.

It sounds like you are starting a very good time in your life; you should be excited and looking forward. Your employer pffers to pay for education knowing that life sometimes changes our plans. People have kids, nervous breakdowns, drug addictions, religious awakenings, cancer; people get into car accidents, etc... they figure this stuff into the calculation. They know there's no guarantee their investment will pay off. (Check your contract to be sure there's not a required amount of work you must do, or else you have to pay them back.) Take the free education! Make plans for your future! What's the alternative, to just stagnate where you are?

You only get one life. When you finish this one, you're not going to get to come back and try it again without MS.
posted by LobsterMitten at 9:24 PM on October 27, 2006

Also, I agree that a counselor would be a good idea. Most schools have counselling centers that do low-cost counselling; many university towns have people who are willing to do counselling on a sliding scale (pay what you can). You DO have time -- one hour a week? It's not that much. One symptom of depression is making excuses for not getting help; just go once or twice to see if it helps.

I don't mean to sound harsh at all, just cheerleadery. It sounds like you are opening a lot of doors for yourself; objectively your situation sounds very hopeful.
posted by LobsterMitten at 9:28 PM on October 27, 2006

First of all, congratuations on your engagement!

I, too, was diagnosed with MS four years ago, and exactly like you my physical exam is normal, my EDSS is 0, and my MRI shows that all is not quiet in my noggin. The combination of feeling healthy and seeing gadolinium-enhanced evidence to the contrary sometimes makes it feel impossible to get any kind of equilibrium. If you're struggling to get your balance, too, I really urge you to ask your neurologist for a referral to a therapist or a support group. Yeah, sometimes I roll my eyes, and sometimes I resent the oppressive Pollyanna-ing, but sometimes the perspective is exactly what's needed.

My diagnosis was, of course, a catalyst for an enormous amount of change in nearly every aspect of my life. Most importantly, I quit my boring career job and went to nursing school, because I knew I couldn't spend the working years I had left doing something I wasn't passionate about. The last thing I wanted to do was look back and think I'd wasted the health I have now. And it was absolutely the best decision I've ever made. I love being a nurse with a passion I never imagined possible, and it fulfills me in a way I didn't realize was unfulfilled. I am happier now than I've ever been.

I don't want to lie; there were definitely times during nursing school where I wondered why I was going through the whole grueling process if I might only be able to work for five or ten years. It wasn't easy to push myself through it, but it was 100% worth it.

I encourage you to pursue a career that's meaningful to you, and not to feel deterred by the possibility that you won't be able to work at it for as long as anyone else.

(Also, having the things I had in my 20s was no guarantee; my husband left me, unable to cope with the whole thing, and we sold our condo as part of the divorce agreement; during school I lived alone in a crappy apartment above a liquor store. If you'd gotten these issues out of the way in your 20s, there's no guarantee that you wouldn't have to be coping with them again now.)

(And a career in nursing absolutely accomodates disabilities. Maybe not bedside hospital nursing, true, but being a registered nurse opens up a staggering number of career possibilities for which physical disability is irrelevant.)

My email address is in my profile, and you should feel free to contact me if you'd like.
posted by jesourie at 9:33 PM on October 27, 2006

Given your story, you're in a pretty low risk group. You may never even have another clinical attack, did you know that? There's no way to know ahead of time.

Do you cross the street, or ride in cars or airplanes? Does the idea of getting disabled in an accident during one of those activities make you not want to go to college? No? Why not? How is this different?

Live your life.
posted by ikkyu2 at 12:22 AM on October 28, 2006

Are you taking preventative medication? There are some great treatments which will keep symptoms at bay quite well (although depending on where you are you may find them to be fairly expensive).

My partner has had MS for 7 years, and has been fortunate in not having had many serious attacks. She's on Copaxone which keeps a lot of symptoms at bay, but one of her biggest pieces of advice is "GET FIT". She trains heavily in athletics, and since she started doing so she has been much better.

It sounds like youre trying to decide whether to give up on your future or pursue it. Whatever happens, you should pursue it. You've got a disease which leaves you with uncertainties, but nothing in life is certain. People get into terrible car accidents, or have strokes or any number of other awful problems, but to sit back and decide you shouldn't pursue your future is the wrong way to go about it.

Be honest with your partner - I assume you have already. Read some books on coping with it. Go to college, pursue your career, eat healthy, get exercise, have kids and look forward at the good things you can do, rather than what might make things harder for you.

In short, plan ahead as if you don't have MS, but keep it in mind - for example, when buying a house we chose single storey houses only, despite my attraction to double storey.

Oh, and don't avoid having kids because of the miniscule chance that they might have MS. There is no history whatsoever in my partner's family of MS. I won't avoid having children because of a minor family history of heart disease, which is a very real risk.

Have kids if it's in your heart to do so, love them and be loved in return.

I wish you all the best for your future!
posted by tomble at 12:24 AM on October 28, 2006

There are tons of opportunities for doctors, nurses and allied health professionals that do not involve physically being in a location tending to someone. Check out disease management/case management, telehealth, working for a laywer doing malpractice research, medical writing (which is what my job is)... the possibilities are truly endless. Lots of nurses and others end up in disease management, for instance, after being burnt out on hospital shifts and seeing naked bodies. DM (disease management) follows people who have chronic conditions. I work in DM as a medical writer, and I have a chronic condition myself. While I don't consider my condition a disability, it has allowed me to reach out to others with the condition and educate them about it.

Why don't you visit with a social worker? Ask your neurologist for a referral. Social workers are generally equipped to help people with this type of choice-making. If you are seeking financial planning, there are many fee-only professionals who can help you--you pay them a fee in exchange for several hours of time, and they help you figure out what you need to do to reach your financial goals.

As for having children... there are many ways to have kids without giving birth. You can be a great friend to children, either that you're related to or that you are not. You can adopt children, which eliminates the chance that they will get MS from you--but every child is a crapshoot. I mean that in the nicest possible way. You have no idea what is going to happen with people as they grow up and develop, even if they don't have your DNA. My rule is I am not going to have kids for anyone but me. This disappoints my husband--he is older than me and ready to have kids--but it's what I have to do for me. I don't want to do it unless I am 100% committed.

I wish you the best of luck.
posted by FergieBelle at 7:29 AM on October 28, 2006

Anon--This is it. This is your life. No do-overs or take-backs.

You can either let your life be defined by the disease, or you can define it yourself in defiance of the disease. Define it yourself.
posted by adamrice at 8:06 AM on October 28, 2006

Repeating just about all the other responses, my heart goes out to you, and you have to just take your life as it comes and not worry about what may or may not happen.

As adamrice said, don't let MS define you. It is just one aspect of who you are, don't let it overshadow anything else.
I wonder if I might be a bit crazy, but late last year I invested pretty much all I have into buying a business (solo massage therapy clinic). I took over in January, and in February had my biggest exacerbation to date. I managed to work through it - NOONE noticed anything was wrong with me. Since I am my own boss, I can take time off when I need it without answering to anyone else.
What I'm trying to get at here is that if I'd let my fears about future disability get to me, I would never have taken on this business, which is just the best thing I've done for my future.

I am single (once more) have a daughter who will be 13 in March. I have pondered the concept of more children (not seriously, but as a *what if*) and that is indeed a complex issue that requires much discussion between you and your partner and the medical professionals.

I am an occasional visitor to some of the MS forums, but as you noted, it can be hard chatting to people on the more severe end of the scale about the disease. I find that I can't relate you where they are at in their stage, mostly because i try not to think about those extreme possibilites too much as it saddens me. Having said that though, I have chatted to several people at a similar stage to where I am at, which has been incredibly positive. It's also rewarding just to be there for when newly diagnosed people( or relatives or friends) at that shellshocked stage come in looking for some answers.

I know how isolating it can be when it comes to informing those around you. I believe it should be on a need to know basis.

Watch out for depression, if you start feeling depressed do whatever you need to to overcome it - see a counsellor, exercise, medication, meditation, whatever.

Educate yourself about MS, Knowledge Is Power.

MS is a kick in the gut, and can hit when you least expect it. Or it may just sit there and do nothing. Keep persective, treat yourself well and most important, live your life to the full.

Please feel free to email me for any reason.
posted by goshling at 1:15 AM on October 29, 2006