How do I tell people?

In My Humble Opinion
1

Some of you may know already that I’ve been having health problems. Well, after nearly four years I decided to go ahead and really push for a diagnosis (up until now it’s been ‘probably fibromyalgia, but maybe something else’). You know how they say ‘be careful what you wish for’? Mmhmmm. This’ll teach me.

I have MS. Apparently it’s the good kind of MS, if there really is such a thing. Decent periods of remission, relatively slow progression. Oh, and I also do indeed have fibromyalgia (which I tend to disregard, really, because it’s so overdiagnosed and really kind of a mystery disease anyway). [sarcasm]Yippe.[/sarcasm]

I’ve know about this for a couple of weeks now. I went for the last bit of testing back at the beginning of November, and had the results within a couple of days. But I keep putting off everyone who asks, telling them that I haven’t been to see the doctor yet (true, but I had the results faxed directly to me, something that no one else knows). My parents, my in-laws, my friends. Mr. Bobkitty. I’ve been lying to all of them. This is the first time I’ve admitted to anyone else what’s going on. Mr. Bobkitty is becoming extremely impatient, and is ranting about stupid doctors and how useless the medical profession is. I don’t know how much longer I can hold him off (though I successfully hid the illness for over six months at the beginning, and to this day he has no idea of just how bad it gets).

I don’t want to tell anyone. I don’t want people to treat me differently, or talk about me in hushed voices, or look at me in pity. But I can’t help but be realistic… some people have to know, because if anything were to happen- like I fell, or something- they would need to be prepared and know to not freak out. When Mr. Bobkitty and I went to Disney with MamaKitty back in January, I wound up falling down a flight of stairs and totally wigged out MamaKitty. She spent the rest of the trip watching me like a hawk, and it was very disconcerting.

I hate this diagnosis. I’m angry with myself, because I know what it’s already taken from me, and I know it’s just going to get worse. I used to be a martial artist, but had to quit four years ago when the pain and associated symptoms got to be too much. I collapse at the end of the day because it takes so much energy to go through the motions at work and school. I force myself to continue, to try to do the stuff I used to be able to, but I know I’m not really living.

I’m 28 years old. I work full time, I go to graduate school full time, I volunteer as a consultation for several organizations. Mr. Bobkitty and I are in process of building our dream home and fixing up our current home so it can be sold… we do most of this work ourselves. I can’t let this stop me or slow me down, and I can’t have people (who no doubt mean well) telling me that I can’t do this or that, or that I need to cut back on work or school or the house.

sigh I know I have to tell Mr. Bobkitty, but I don’t know how. I have to tell MamaKitty, but that’s going to be an absolute nightmare and I’m putting it off as long as possible. Who do I personally have to tell? Can I have Mr. Bobkitty tell his parents so I don’t have to? Can I have my friends find out from Mr. Bobkitty or through the ‘grapevine’? Can I leave it up to MamaKitty to tell my siblings? Who do I have to tell in person, as opposed to on the phone or via email? HOW do I do this, and manage to also get across the idea that I’m not a frail creature that needs to be protected?

Any help is appreciated.

-BK

2

My thoughts are with you. As for telling people, see if mabey your doctor can give you some literature to help explain your situiation to the folks.

I would also explain to Mr. Bobkitty how you feel about being treated differently because of it. I think it would be better to tell him soon as you can. Have your liturature with you and mabey you can get some information from support groups.

I think it would be OK to let mom tell the sibs. In the past when bad things happened to me, I didn’t have the strength to tell many people, just my husband and my best friend and I told them if anyone asked to fill them in. It’s only what worked best for me.

I wish I could offer you more, but you are in my prayers.

3

Man. Condolences on your condition, bobkitty.

To the main point. Mr. Bobkitty, of course, will be relatively easy.
“Honey, the doctors have given me their diagnosis. I have a mild form of MS.”
{pause to peel Mr. bobkitty off of the ceiling}
…and so forth.

If you can stand the duplicity, I’d suggest you not tell him how long you’ve known. It’s terrible, I know, but your having kept this to yourself will hurt him.

Then discuss with him how and how much and who.

4

I’m sorry, bobkitty. I promise to treat you like the lap-jumping pain in the ass you always have been, no matter what. :slight_smile:

I don’t have any easy answers. Nor do I have advice on how to tell people. But I do think you have to steel yourself for at least a short period of pity/kid-glove handling/etc. I think that is inevitable. However, I suspect there are strategies to shorten the time you have to endure it. With your close friends and family, just being yourself will go a long way towards eroding their initial reaction. And perhaps you can work out some quips and comebacks to point out to them when they’re treating you differently.

For Mr Bobkitty, perhaps the relief of knowing will far outweigh the grief he’ll feel over the diagnosis. It’s not knowing that is so torturous.

If he is upset about your lying, tell him you needed time, yourself, to think about what this means for you. It’s YOUR disease, it’s your body and your person. You’re entitled to that time. And you can also tell him that your fears about being treated “like a sick person” also prolonged your delay in telling him.

5

Tell Mr. Bobkitty. Now. stat. He loves you and this is the kind of stuff you shouldn’t shoulder alone.

Beyond that, live your life as you want to live it. People will only treat you like crystal for so long. Tell them you appreciate the love but you’re not dead and you plan on living your life as fully as possible, diagnosis or no.

Any one who says you can’t do something, simply smile and ask if they’d like to bet cash on that. Difficult does not mean impossible.

Tell the people who need to know. If you’re going to miss classes, tell teachers. But refuse to accept pity about it and live your life as you want to. You control your life, not other people.

Go get 'em.

I had a similar bit, but mine was non perminent…freshman year of college I was pregnant…then I landed in the hospital with my liver trying to kill me. And all through it I did school, did parties, did life as I wanted to. People told me that I “had” to take a semester off or “had” to at least go home. I lived my life. It was rough, but it was my life, my choices, my control and my effort. No one else can make you weak willed.

That said, take care of yourself well so that you are able to do all that you want to do. Best wishes.

6

bobkitty, I was diagnosed when I was 29. I told everyone, once. This is something that you need to share with your husband and other family members. You can let friends know when you’ve had time to deal with it, and are comfortable doing so.

Like you, I had been very athletic all my life until the diagnosis. I was a surfer girl, a rock climber, kayaker, and advid hiker. Now, at age 44, I still enjoy hiking when I can. I have good days, and bad days. Most of them good.

Since you were just diagnosed, educate yourself about MS. Read everything you can get your hands on! Research on the net. Learn about the many (myriad) ways of treating MS. And be prepared to deal with ignorance from well-meaning, but misinformed, people. Joining your local MS group is something I recommend heartily. I’ve made some wonderful friends there, and the support can be an emotional life saver. Or you can always email me. Anytime.

I wish you all the best, sweetie. I understand what a shock it is to hear the words coming from your Doctor’s mouth. I’ll be rooting for you!

[fixed da bolding-Czarcasm]

[Edited by Czarcasm on 12-03-2001 at 08:45 PM]

7

It’s up to you whether or not you tell Mr. Bobkitty how long you’ve known, but let me assure you this: You’ve violated his trust in a major way. Tell him about the diagnosis NOW. The only mitagating factor I can see is how devastating a diagnosis is even a “mild” case of MS.

He married you “…for better, for worse, in sickness and health…”, and by not telling him, you’re robbing him the chance to live up to his vows (not to mention depriving yourself of the necessary support of the one closest to you). He swore to be your partner and help you through whatever came, so put him to work already, and let him do his thing.

Once you’ve got the Mr. dealt with, the two of you, together, can figure out where to go with it.

That said, I’m terribly sorry to hear the diagnosis, but I’m sure you’ll cope well. I like your sense of humor, and your intelligence, and I think you’ll come to terms and adapt to the new reality better than most. Hang tough, and don’t forget to pamper yourself now and again. When everything looks crappy, a massage can change the whole outlook. A day off with no responsibilities can reset the meter, and so on.

8

Eh, Bobkitty, you’re thinking about this too much, sweetie. You’re “cerebrating” too much. Just tell 'em. Flat out. “Hey, I got my test results back and there’s good news and there’s bad news. The bad news is, it’s MS. The good news is, it’s the good kind, the kind with slow progression and lots of remissions.”

My experience is that dancing around the less-than-good news, doling it out in carefully metered dollops to a chosen few, will only make it worse. It’s the difference between pulling wax off your legs in little dribs and drabs, and yanking the whole thing off at once, YEEOW!! Ya just gotta go for it.

People who weren’t told at the same time as other people will never forgive you for it. “What, you didn’t trust us to be able to handle it?” Also, if you tell only Mr. Bobkitty and then try to make him promise not to tell anyone else, that puts him right where you are, right now. Are you enjoying it? Neither will he.

And swallowing it, holding it back every time you’re talking to someone who OUGHT to know, just makes you sick, and doesn’t help anybody else. They’re gonna find out, sooner or later, might as well make it sooner.

Blurt it out, babe. Spill the beans. It’s not your job to make sure the folks you’re talking to can handle it. They’re not children, who need it filtered, or to have you put some spin control on it. They’re grownups–handling it is their problem. Give them the facts, let them figure out how to deal with it.

9

Bobkitty, is it possible you’re in a little bit of denial, and not telling anyone keeps it from becoming “real”? Which is totally understandable, if that’s the case. Your “condition” is the same whether they know or not. Let the others in; let them feel bad for you, and help you, and amaze you with how good they are with the news.

10

Ahh… sorry to hear that. I’m surprised to hear you have both… I’ve heard FMS referred to as “MS Type B” because they’re so similar with FMS being milder, so it seems redundant to declare that you have both MS and FMS.

I know you face a hard road ahead, but you can do it. Just be sure to put yourself first - no doing things for other people that put your health at risk. I don’t have MS, but I do have FMS, and I know from harsh experience that you have to be careful, because one small setback can make you sick for a very long time.

See if you can find a support group locally. There will be days when you just want to complain long and loud about how unfair it is and how much it all sucks to someone who knows exactly where you’re coming from. Don’t ever let anyone touch your ankles - it hurts! - and don’t let “normals” get you down when they don’t understand. You’re lucky in one respect - MS is a damn sight more respected by the community at large than FMS is, and people will treat you with more consideration. Nothing worse than being chronically fatigued and in pain, and having your “friends” whispering about how healthy you look when you’re “supposed to be sick”. Invisible diseases - yay.

Take it easy, my friend, and don’t stress yourself too much. Tell your family when you feel comfortable doing so, but remember that they will support you. Don’t feel obligated to tell everyone if you don’t want to, and some people don’t need to know more than the fact that you are ill. If you want more information on FMS, here’s a link to my FMS Support Group’s website. They might be a tad too far away from you to be much good, but they have a good collection of links.

11

You might start by having Mr. Bobkitty read this thread.

After you tell him, of course. Depending on how he likes to receive news of this sort.

12

Umm, ixnay. I think letting Mr. BobKitty know you told us first might not be a good idea. Does he read the board? If so, you need to tell him now.

13

I, too, was diagnosed with MS in my mid twenties. Pain was not an issue in my case, though. I had numbness in one leg and weakness in the other that made me trip a lot (foot drop). Subsequent attacks included optic neuritis which made me lose the sight in my left eye twice (temporarily), some facial nerve involvement and more leg symptoms.

I freaked out when diagnosed. Since I had been hospitalized with the possibility of a spinal cord tumor at the time, my family and future husband knew of the diagnosis immediately.

It took me ten years to realize that I had the “good” type of MS and would probably not wind up paralyzed, incontinent and blind. In the mean time, the trauma of facing all the awful possibilities of this diagnosis sent me scurrying after mood altering drugs (NOT a wise choice, in retrospect).

A wise neurologist finally told me that my type of MS would probably leave me in good shape until well into my seventies and advised me to live my life as if I was normal and forget about MS other than checking in periodically to see if there were any new treatments. Best advice I ever got.

I am now 50 years old and have only mild attacks every 4-5 years (compared to 2-4 attacks a year the first few years). I do not discuss my disease with friends and acquaintances. They do not need to know and their reactions would probably be more extreme than the situation warrants.

I now have 3 children and the only evidence of the MS attacks is a mild weakness in my left leg. I live an entirely normal life.

I suspect that your physical pain is from the fibromyalgia or something else. That may turn out to be more debillitating than the MS.

In any case, I hope my experience will help you put things in perspective. Please tell your husband ASAP and then decide together who, in your family, needs to know. I hope that this will turn out to be just a little bump in the road of an otherwise long and healthy life for you.

14

First off, thanks to everyone who’s replied to me through this thread and email. I really, really appreciate it. Y’all are just the greatest. ::wipes small tear from eye::

Secondly, never let it be said that Mr. Bobkitty doesn’t have impeccable timing. As I’m getting dressed for work this morning, the phone rings. It’s Mr. Bobkitty, calling from work, and he wants to know when we can expect to hear something from the docs. ::sigh:: I ask him if we can talk about it later, like after work. No such luck. For those who don’t know, Mr. Bobkitty is a therapist. Surprisingly little gets past him. So just based on my response he’d pretty much had me medically diagnosed and psychiatrically evaluated, though he didn’t quite nail why I hadn’t told him (he went with featherlou’s idea). I told him that I didn’t want people treating me like I was fragile… his response?

“And you expected this from who, exactly? You know if you fall down I’ll just kick you out of the way and keep doing what I’m doing.”

Ahhh. Gotta love unconditional support. :wink:

Part of the reason I hate being sick (and why I held off not only telling people but also going to the doctor initially) is because Mr. Bobkitty is not the healthiest of individuals, and I’ve always felt it’s my job to take care of him, not the other way around, and if he has to worry about me it’ll only make his stuff worse. Silly, yes, but it makes sense in my little brain. :slight_smile:

So Mr. Bobkitty now knows, and it’s just a matter of time before I tell other people. DDG makes two really good points… one about the wax (eewwww) and the other about telling people at different times… we’ve seen where that got President Bartlett, right? But I think people will be on a need-to-know basis at this point. My boss, my teachers (who are a bunch of shrinks also… the news will spread like wildfire through the department), my family and in-laws, and friends who ask. And with the exception of the boss and the teachers, I’ll only tell if/when they ask. I don’t think I could bear that phone-call-out-of-the-blue thing.

Oh, and 'punha… Mr. Bobkitty doesn’t read the boards. He sees absolutely no point in it, and at the end of the day he doesn’t want to deal with anyone whether virtually or not.

Thanks again, everyone. I really do think you’re a terrific bunch of people (even Cranky).

-BK

15

I am soooo glad to hear that you told Mr. Bobkitty. Now, don’t you feel relieved?

I’ve got a cousin and a good friend who both have MS. Just want you to know that I don’t think of them any differently now that I know they have MS. Maybe it’s because they don’t seem to let their illness interfere with going about their lives. But it’s really just a footnote to who they are, not the story.

I’d advise you to seek some sort of treatment asap. My friend, Juli, avoided taking medicines for years because she was trying to stick her head in the sand and hope it all went away (her words, not mine). But recently she spoke to her doctor about it and he strongly advised her to start a daily treatment. She switched drugs already because the one made her feel out of it, but the new one she’s on leaves no side effects. Yes, she’ll have to take it (or something else) the rest of her life and that’s a bummer, but if it will stave off some of the symptoms indefinitely, it will be worth it.

Good luck and good health!