*Author's Note: I agree 100% with Lisa E.'s comment about taking a break from boys for awhile. I am not ready to share my life with anyone yet, but every once in awhile, my little sister's cooing lovey-dovey stuff gets to my black, shriveled heart. Besides, I am trying to break my personal record for Longest Time Without Sex. I am determined to do it and do not want to be tempted to throw my good start away. Don't get me wrong, I'm not going for a monk-like existence, I am a proud supporter of battery companies and feel I need no other companionship than what they power.
That has to be one of my favorite sayings of all time. It can be applied to almost anything, not just what it was originally intended for. Those words have been on my mind because I must be losing my mind. Lately I have been thinking about male companionship again. What is wrong with me?! I have no intentions of ever getting married again, but when I listen to my little sister and her boyfriend/fiance giggling and tittering together I start to think that maybe I need someone to coo and titter over. This is where the title of this post comes in: when do you tell someone that you have MS? My family agrees that I don't have to tell anyone anything, at least not right away. But I feel like it should be known up front to save everyone from the trouble of realizing later that they just can't handle it. My emotions are not easily touched so I'm not worried about my heart being hurt, more my pride than anything. As little as I care for others' opinions, it still mortifies me when I am treated like a diseased thing that should be quarantined. It is very hard to hide the way I walk, my spotty vision that makes me have to bob my head around to see anything, this darn fatigue that demands a long, luxurious nap everyday, the fact that I don't have a job, and I have no money. I'm not ashamed of having MS. I'm not ashamed of the way I walk or any of the other things I mentioned above. I have no control over these things and do not get to dictate the way my body functions these days. But I can't help wondering who would want to be with me?! Don't read into that as a sign of depression or anything like that; it is the MS part of me talking. The non-MS part of me knows that anyone worth their salt won't care, will be able to see beyond my physical problems and see the me that is still an immature, stubborn ass that is going to do as she pleases regardless of what they think. Its the MS part that makes me shy away from people and decide for them what they think of me -- a bad habit that I really need to break. My therapist told me to let people decide for themselves and not do it for them -- great advice that I am still working on.
The demise of my marriage has also left me scarred and scared of relationships. Everything I thought I knew about my husband was wrong and it left me feeling that I am a terrible judge of character to have been so blind to the early clues -- there must have been some that I missed and I keep going over and over things to see where I missed them. Hmmm, this reminds me of something that happened a few months ago. I talked my little sister into going with me to get my Tysabri done because it is such a boring 2 hours and company helps the time pass. She and I were talking about our marriages and how they fell apart. I don't air my dirty laundry in public, on here, yes, out and about, no. While I was saying that my getting MS was the beginning of the end for my marriage, 2 women and a man sitting near us exchanged looks like we had no idea of what a marriage was. Like we were silly children who did not take our vows seriously and took the easy way out. I wanted to tell them that they had no idea of what I had been through. Their pompous, uppity, snarky exchange of knowing looks could be stuffed up their rose scented, superior behinds. What I was not willing to say in a public place, but what I really wanted to say to them, was that the stress of my being diagnosed with a chronic, debilitating disease that drained our money while preventing me from bringing any in had a terrible ripple effect. My husband's alcoholism and violence increased while my ability to defend myself decreased. I know what my vows were -- I was there -- but why should I stay married because I made a vow, when he broke those vows and things were only getting worse? How could I trust my uncertain future to a man whose temper was touchy at best and was becoming more irrational daily? So if that makes me a person who doesn't understand marriage, so be it. I'm not going to lie, I went from not having to worry about money, spending as I pleased, a 4 bed 3 bath house with an in ground pool, a house 300 square feet bigger on just the first floor than this whole house combined, to a life with no money, worrying about the few dollars I do have, and if they will cover what is needed around here. But I gained something I have been missing for too long -- my self respect. I can't respect myself when I put up with the things my husband did. I'm embarrassed that I had to call the cops on him and he went to court for domestic violence. I'm not embarrassed that I called the cops, I'm embarrassed that I was in a marriage that went that way, if that makes sense. I'm ashamed of how long I stayed around and how many chances I gave him after he showed his true colors. I am no one's welcome mat and I made a solemn vow to myself that all relationships from now on are going to be on my terms and the first sign of something unacceptable is the end. I may be poor and living in a sub-par rental, but I can respect myself again and know that I did the right thing. And that is all that matters.
I just found your blog today through another blog. WOW. Youare a woman of incredible stregnth!
ReplyDeleteKimberly
http://myjourneywithms-kimberly.blogspot.com/
Hi Blindbeard: I try to drop by every few days and your post today hit a nerve with me. I wrote about this very topic in August 2007. Here is the link
ReplyDeletehttp://disablednotdead-anne.blogspot.com/2007/08/to-tell-or-not-to-tell.html
When to tell a family member? I chose almost never. When to tell anyone else? Only if it comes up in conversation is what I chose to do after my workplace "found out"
Thank you for posting and sharing your innermost feelings. You are not alone.
Anne
Hi Blindbeard--
ReplyDeleteWell I tried to further investigate relapsing-progressive MS, and came up with little more than the original definition. I forget where I first read about it, but I need to take some MS books out from the library next week, so I'll see if I find anything else.
Here is a link to an organization which places people with disabilities into at-home customer service jobs(through the computer and a phone line): www.nticentral.org. I worked for their contracted IRS forms and pubs program for 2 winters. Unfortunately they have finished hiring for this year, but they do have other work if you regularly visit their website. They are the nicest bunch of people, and although the work is far from exciting, it kept us from completely going into massive debt.
Another company (which NTI contracts with) is www.alpineaccess.com. They usually have ongoing openings and permanent work.
Jen
If you just want to "titter" and not get emotionally involved then your date doesn't need to know. It does sound like from the way you describe yourself that they are going to know anyway so if they ask you out, they like you. I think you tell them if they prove themselves worth telling. If you are both just having fun and it doesn't come up, why bother.
ReplyDeleteOn another note, I get what you are saying about the embarassment. I was hit once when I was only 15 and I was embarassed too. Still, you can feel good about yourself because even under terrible circumstances it can be hard to do what is best for you. You should be proud of your strength. I admire you a lot without knowing you because I can hear your determination and lack of bullshit just in your writing.
Hi! I'm of the complete opposite opinion of everybody else.
ReplyDeleteI told/tell everybody I have MS.
I think it's just better to get it out in the open and be done with it.
Everybody ends up finding out anywayso I figure I want to be in control of who and when I tell,rather than the grape vine.
As for men I'm not finding that any are running away when I tell them. A guy I work with met a woman with MS through a dating service and they seem too be doing OK.
I can relate to your marriage situation. Mine ended prior to MS because the guy was a drinker. I thought it wouldn't matter .that love can cure all. Wrong !
I'm broke but better off. I know too many women stuck in loveless marriages due to money concerns.
From your photo you look attractive so I don't see why a man wouldn't be interested in you. Relationships are always risky even when we're healthy.
Hope you don't find my comments rude.
Good for you for doing what's best for you!!
ReplyDeleteIt sounds like your marriage was unhealthy even outside of MS. I once was the person who called the police on a member of the family who had attacked another member of the family. A scary thing to do.
Regarding telling dates. My personal take would be that MS is a part of you but is not the entirety of you. So it doesn't need to be something to hide or something to wear on your sleeve. I would wonder more if it might be a good idea to spend some time guy-free for the time being. Just a thought.
I am new to reading your blog, although I have gone back now and read since you started until now. I am also new to MS. Being only 26 with three small children this has come as a shock to me. I am still at the "who should we tell??" part.... We decided only my parents and sisters, my husbands parents and sister, and our best friends. But then that leaves so many other people in our lives not knowing. I guess for me I am not ready to answer the questions yet because there is so much I don't know.
ReplyDeleteWhy am I leaving this comment?? Oh yes, because I wanted to say that no one needs to know unless you are ready to tell them. And I agree if you tell a guy and he runs... guess he would have been a bummer to be around long term anyway.
When to tell is a very sensitive issue. I didn't let anyone at work know until my balance got so bad I ended up on a cane. Then I wnet through Human Resources and filled out all the FMLA paperwork. That gives me protection for taking time off for appointments and mad days without being penalized for attendance. As far as my personal relationships. I married in April and Mark and I had just started dating when I started having pretty significant problems. He could have bolted at any time, and didn't. 4 years later I'm arried to a man I KNOW will always stay beside me now matter where my MS journey leads. IF he HAD bolted. I would have been better off. I would only tell someone I was dating if it really looked like we we're getting serious. To wait too long is unfair to them and you don't want to become too emotionally tied to someone who wouldn't stay through the tough times.
ReplyDeletehttp://myjourneywithms-kimberly.blogspot.com/
I also had a husband who was a cad and physically abusive for years. That was before I had MS but I recall the first time he hit me which was during our honeymoon.
ReplyDeleteI stayed for 4.5 years in a mess of a situation. I left him and moved myself and a few meager possessions to a little apartment where I slept on the floor at first.
I was scared to death then of a whole new life but I look back and see that even as a singleton without a date and with MS, things are SO much better.
Nothing wrong with some batteries in the cupboard either.
You know, I imagine this topic of "telling MS" annoys you almost as much as it annoys me! I don't know if having my MS expressed openly is any "better" than keeping it to myself. I'm just annoyed to heck I even have to MAKE these kind of decisions.
ReplyDeleteAs far as humiliation in relationships, I'm with you...since I work in psychiatry, I totally "GET" the humility of explaining what turns out to be unfavorable choices I make in my live and love. I mean, you'd think I would have LEARNED something in 22 years of dealing with other people's dysfunctional, abusive, and crazy relationships?!? But instead, I'm just Oprah material waiting for my own RELATIONSHIP talk show spot!!!
Linda D. in Seattle