Coming Out…How the World Found Out I was “Damaged Goods”

Another of Piper's photos

Another of Piper’s photos

When I was given the FINAL diagnosis of having MS and my response was an immediate “oh fuck” my neurologist at the time argued with me that it was an “oh damn” moment, and now, years later, I agree, but at the time, I thought he was a nut job.  After all, how would HE know?  HE didn’t have MS.  But, he explained that the only reason that he pitied me at all, was that I would have to tell people, and that saying “I have MS” is like saying “I have cancer” but not elaborating on what kind of cancer, where or how severe it is.  He went on to tell me that there are different forms of the disease, but that each and every person’s experience with MS is unique.  He warned me that just about everyone that I told would know someone (or know someone who knows someone) that was diagnosed with Multiple Sclerosis and they all would have stories.

He was pretty damn accurate in that prediction.   As he warned, the stories ranged drastically, from the friend that has had it for 20 years and still runs marathons, to the cousin of a c0-worker that was diagnosed and in a wheelchair within 18 months.  In hindsight, knowing what I know now, and hearing so many other stories of “how it went” when they got the diagnosis, I think he did a pretty decent job of laying it out there for me.  Given that there ARE so many unknowns, and the fact that MS was NOT his specialty, nor did he have any patients with the disease, he really did allow me to leave the office believing that I was going to be alright.  But, just before leaving the office that day, I asked the question that had been racing around in my mind from the moment the words left his mouth, “Do I have to tell people?”  He was quick and confident with his answer.  “Not necessarily,” but was much less prepared for my follow-up.  “Do I have to tell my husband?”

This may seem like an odd question, but really, NOT so much for me.  I was in a marriage that did not provide emotional support and up to that point I had driven myself to and from each and every appointment and procedure, many times feeling scared, alone and sad, but knowing having him there wouldn’t have changed that.  At the end of the day, it came down to the simple fact that he did not deal well with emotions, in any capacity, and as a result, even if he had come with me, I would have felt put upon to make sure he was okay, rather than focusing on myself.   I realized that me, myself and I needed, for once, to take priority over all the bullshit and miscommunications that made up our marriage.  I wasn’t sure I could handle adding him to the equation of things I had to deal with.

I did end up telling him the day after getting the news, primarily because he knew about the brain scan and that I had gone in to get the results.  When he asked me directly what had transpired, I couldn’t lie, it’s just not who I am.  I might have been able to “withhold the information” but when confronted with the dead on question “what did the doctor say?” I couldn’t avoid telling him.  I also needed to take the kids into account.  It was going to effect them (how and to what degree, I had NO way of knowing) but I knew from the get go that I would not be dishonest with them.  SO,  my husband knew.  But I also shared with him that I had not made a decision about what I was going to tell others.  The initial diagnosis of Transverse Myelitis was still out there, and could buy me time.  I had explained to everyone that the doctor told me that it is a temporary condition, that would eventually go away, but that it could take up to a year or more for all the fluid on my spine to dry up and have my symptoms disappear.  My thought was, a year is a long time….a LOT can happen in a year.  The doctor had told me about patients with MS that have an initial flair or two that then go into remission and not have any significant issues for 5 or 10 years.  What if that could be me?  If I got better, and stayed that way?  Was it really necessary to go through the whole pity/sympathy thing with people I knew casually through the kids schools or from the neighborhood?  Would it be better to just wait and see?

About a week after getting the diagnosis and telling my husband, we were invited to a Christmas party at one of his college buddy’s homes.  My folks were visiting and I thought it would be good to get out and enjoy some holiday cheer.  The night before the party I arrived at the door to my husband’s office in the house (we hadn’t yet resorted to emailing each other, just always talking in the office.)  I reiterated that I had not yet made my decision on how or what I was going to tell people about the MS, and asked that for the time being we stick to the original Transverse Myelitis story that everyone already knew.  He got a sheepish look on his face and mumbled “they already know.”  Anger slowly crept in my direction, but I stayed it with  my question “who already knows?”  I figured that if we were just talking about the hosts of the party, the damage was minimal, and given that they ARE his good friends, it might be a forgivable offense.  BUT his response was NOT what I was hoping for.  “They all know.”  ALL consists of a large group that were friends in college, HIS friends, and although I was cordial to all, I was never really accepted, after all, he was a craddle-robber, marrying a woman almost 9 years his junior.

Anger arrived in full force, but was accompanied by a huge dose of hurt.  This was MY disease!  MY information to share (or not share) and he had taken that away from me.  I came to discover that he had spent the past week, telling anyone and everyone that he had contact with, about my diagnosis.  I realize now (and knew subconsciously then) that this was how he was “dealing” with it, coming to terms with having a spouse that was sick.  Rather than coming to me to talk about it, he talked to others.  But what he didn’t get, was that it was MINE.  That may sound selfish (or foolish) but I am the one that has it, that has to live with it, and all the symptoms that come along with it, and ultimately I am the one that should have been able to decide if and when people would know about it, or not.

BUT the cat was out of the bag, and “not telling” was no longer an option.  Knowing how voracious the grape-vine grows here in our city, I knew that it would only be a matter of time that this information got back to MY close friends.  If I continued on with my Transverse Myelitis story to them, and then they heard the truth from others, it would be damn hard to explain how or why I had entrusted such personal information to social acquaintances and not to my true friends.

So I came out!  And each and every time someone asked “How are you?”  OR “What happened to you” (as I did not look like someone that should be walking around with a cane) I would explain that I have MS.  I never say Multiple Sclerosis, but not because it sounds worse or more severe, but because I can’t say it!  I don’t think at this point it is some underlying form of denial, as my EX claims.  I literally can NOT say it!  I try, and I practice, but every time, I stumble and mess it up.  It is bad enough that I sometimes slur my words (sounding as if I have been drinking at 8 in the morning) I don’t need to attempt to say a word that I have never been able to say.

I was off and telling the world that I had MS (this may have been a bit too much information for a few gas attendants and shop clerks I encountered along the way) but I quickly realized that I was OK with people knowing.  After all, if I looked good, and told them in a cheery way, maybe I could ward off the pity I so much wanted to avoid.  Any time someone would react with “gosh I’m sorry” (which is a pretty normal response, it turns out) I would quickly respond, “please don’t be, it’s just something that is a part of my life, no worries.”  BUT what I have now come to understand is that in all that time, that I was busy telling people that I was ok and that it was just a “bump in the road” I was too busy trying to prove to world that I AM strong and can handle anything, to realize that my life as I knew it, was falling apart.

20 Replies to “Coming Out…How the World Found Out I was “Damaged Goods””

  1. My husband and I call it MC for my condition to say the word gives it power. I have never really come out about it. My stepsons know. Bless his heart, the eldest drove me to my spinal tap when he was 19, My husband is an alcoholic, sometimes in recovery, sometimes not. For my initial tests and diagnosis he was either passed out in the car or doctor’s lobby. I was diagnosed with if it’s nothing else it has to be this in early 2009. 2010 he was out of it and had cancer op. 2012 he was either in jail or rehab. I lost my job end of 2015 and he was off again. He can’t drive so it’s all on me and he doesn’t work, It’s all on me. He keeps the house immaculate. I am so not a domestic goddess; does all the laundry, ties my shoes everyday and helps me in and out of the bath. I worked for a large institution and it became very obvious that something was wrong. Typical reaction: OMG” Some people guessed but I just looked at them. I did at the end have to put it in writing as I was having issues with my necessary accomodation. When my husband saw me referred to that way in print; he put his head on the table and sobbed.

    1. Wow – you have a lot on your plate! Thanks for sharing. I am always curious about the question of IF people have “come out” and if YES then how.

      Cheers!
      Meg (aka BBH)

  2. Thanks for share. My brother had progressive m s. His wife moved with him to California from NY. She just left him in the care of an aide. He was very, very disabled. Two years later, I got optic neuritis. The neurologist wasn’t sure about the diagnosis (before MRIS). Luckily my 31 year husband just cried with me and told me that he would never leave. That was 33 years ago. I need him every day. He moves my commode, helps me shower, pulls up my pants if I can’t. It’s not easy…for either of us. It’s til death do us part.

  3. Thanks for sharing your coming out story. I am glad that MS gave you that nudge to get out of that marriage, because the last thing someone with a chronic condition needs is to be dealing with excess baggage from a so-called caregiver. When I got diagnosed 13 years ago, my hubby had a slip of the tongue and instead of saying relapsing remitting, he called it remitting repulsive. That’s been our name for it ever since.

    1. HA…like the nickname. Unfortunately MY “wusband” seemed to think it was my fault that I “got” MS….as if I just checked off the wrong box on my application for life:) I have absolutely NO doubt that reduction in stress and increase in happiness can be attributed to my improvement in health and condition!:) Finding someone that is truly my best friend that loves me for me is AWESOME!
      Thanks for stopping by my blog and taking the time to share a bit about your story! Heading over to yours to have a read!:)

      Cheers,
      MEG

  4. Ironic, isn’t it, that they discover a disease that includes speech problems as a symptom and labeled it with a name nobody can easily say, especially those that have it!

    1. SO true Kerri! Thank goodness it is so frequently referred to as MS, otherwise I am NOT sure that ANYONE would know what it is I have, because I really can NOT say it!:)

      Cheers!

  5. This whole MS thing has been very awful in my life. I can no longer work as a RN and I’m only 40. Now that I no longer work my family doesn’t respect me, at this point I can not see any silver lining! 21 yrs with my husband, 3 girls 18,14,and 6. Sadly, I’m ready to go and not sure how much more I can tolerate. Thanks for the posts all!

    1. DeeDee,
      I am so sorry to hear that it sucks so much right now and I can imagine how different your life is, now that you are not a practicing nurse. I am NOT a psychologist, and to be honest, your message scared me a bit, because I don’t want to mess up what I say to you, because even though I don’t know you, you already matter to me. This may sound cheesy and corny and fake BUT… you are going to be ok and things will get better. I BELIEVE that! It happened for me, and so it can for you as well. I don’t know what all you experience (symptoms etc) but I do know, that if you are feeling that down and can’t feel the love of your husband and children as enough to help pull you through, maybe you should find someone to talk with. A very close friend of mine wrote in an email once, “even the strong sometimes ask for help, and it makes them stronger.” I’m not even sure he got the quote right (would be SO like him to fuck that up) BUT it hit home, because I WAS trying to keep it all in, show the world I was strong enough and could handle anything. BUT there really is NO point to that, it leads to sadness and loneliness. I printed that quote out and taped it to my mirror (that is the first and only time I have done something like that) but it helped, it was a gentle reminder to ask when I needed it. Talk with your husband. Let your girls know how you are feeling (the older ones) and use your family for what they are there for, to love and support you.
      Good luck and keep in touch!!! PLEASE:)

  6. Thank you so much for being honest and real with your post. I can relate to a lot of your stories and it’s great to know that I am not alone!!!! You are not alone 🙂

    I realized that if things in marriage didn’t change with MS then probably only something as extreme as death could result in change (maybe and I’m not waiting around to find out if that’s the case). I was scared to consider a separation because who wants to be alone with MS?! but then who wants to have live with someone who just isn’t on the same page as you and then there comes the frustration and anger and with that… MS symptoms. I am better of without than with. I’ll have to brave this one and it’s comforting to know that you did it, so I can too (I don’t children so I can do this).

    I know he thinks that asking for a separation is because of MS (well yes it is). But it’s not because I am scared, confused or don’t know what I am doing. It’s because my eyes are open (finally) and I’m dealing with things head on which means less sweeping under the carpet and ignoring the big elephant in the room.

    My dear MS, I surely would prefer if you were not in my life but post my sob like baby phase, I have never felt better. I am taking my life in my hands and eating better and getting rid of a lot of baggage that I have been carrying for years. Me and MS, it will be a true love-hate relationship.

    1. Sheracar,
      Thank you so much for reaching out and sharing. It IS comforting knowing that there are others, that experience similar things. Makes me feel a little more “normal?”:) I too, had to decided whether being alone (possibly for life) was better than staying and FEELING alone. My MS made me stronger, and like you, made me truly look at things and my life and make decisions that I probably would NOT have had the strength to pursue, if things had been different. I remember sitting in the infusion center one day, as the man next to me was visiting with two of his grown children, who had stopped by with a coffee for him, to just spend a bit of time with him. It was CRAZY, but I started crying, because I wanted someone to bring ME coffee, to visit ME, and yet, that NEVER happened. I arrived alone, and left alone. It was at that moment that I realized that I would rather KNOW that no one was going to come, that I was alone, instead of always HOPING that maybe this time, he would come.
      So I did it, and in the process, I have managed to reach a point in my life that I have NEVER been happier. Divorce is NEVER easy for kids, but I work VERY hard at being open and honest with my kids, while at the same time, avoiding EVER saying disparaging things about their dad (my ex) to them. I did the on-line dating thing (which I will some day soon write about, as there are some great stories from that.) I went in to the experience, NOT looking for anything permanent, just to simply date, and try and regain SOME confidence, to begin to believe that I WAS worthy of someone kind and nice. I was VERY open and honest in my profile, talking about the MS, my disabilities and how it effected my life. But, I also said that I was NOT looking for someone to care FOR me, but ABOUT me. And then Shawn came along. And I found someone that is wonderful, and amazing, funny and kind. Early on, we talked about the fact that neither of us wanted to get married again (for both of us, it had proven to be LESS than stellar.) BUT we also know, that this is it. We are together, for the long haul. He comes with me to my doctor’s appointments, understands when I am having a bad leg day and massages my feet and calves, and forces me to be more open about the bad things, to admit when the pain is unbearable. He has taught me that asking for help, is NOT a sign of weakness, but rather another way to show just how much I love and trust him.
      I wish you luck in moving forward, whatever decisions you make. Again, thank you for sharing and PLEASE know that I am here, to listen or help in any way that I can.
      Cheers,

      1. Thanks much!! Out of every bad, there is good. Even with MS. Cheers to you and Shawn.

        Hubby and I have to deal with our issues and hopefully the time apart will give us time to let go of the heavy baggage that has seeped into our marriage. Hopefully at the end of this journey we can be together but if not, I hope we will both be happy 😉 If it wasn’t for MS, we would have probably be sweeping and sweeping away. That never works.

  7. When I was diagnosed, I couldn’t hide it. There was something very obviously wrong with me that the whole world could see. I was falling all the time, walking with a cane, headaches that were disabling…

    So I told. And I had missed a good deal of work in those first few months… my boss was an arogant ass about it.

    He went to the HR department and discussed my “options” because I was disabled. Thankfully, I had already been to HR to figure out insurance coverage for treatments and tests.

    And HR let me know I had a valid complaint if I chose to file one against my boss. He violated so many privacy health laws with that one conversation…

    I didn’t file though. I just spent the next year making him feel guilty at every turn. 🙂

    1. I would have LIKED to file a complaint on my EX, believe me. FOR years, he belittled me and made me feel stupid, every chance he could. BUT for me, this was the last straw. We had been to marriage counseling, and I had expressed how I wanted/needed him to support me, to make me feel like he would always have my back. This was BEFORE the MS, and SO, when I was diagnosed, I was actually somewhat excited, thinking that this would be his chance, his opportunity to step up and help me, take care of me. Boy, talk about being stupid:(

    1. Hey lady! Yea, wasn’t particularly happy when it happened…BUT you know what? Everything happens for a reason…and I now have Shawn in my life, which makes up for all the shit:) Hope you are well!

  8. Good post:) And you’re soooo right it’s your disease…. I feel the same way when I talk about MS with people and they go on about who they know with MS and what they can and can’t do…. Well, it’s different to each one of us. There’s no right or wrong and it’s my MS! My husband understands and always has and he feels the same really. My friends understand but my mum find it diffecult but maybe that’s a mummy thing to think you know better…. Have a great weekend:)

    Uh… and I can’t say multiple sclerose either. Don’t think we are meant to;)

    1. HA Mette, you can’t spell it either….ME TOO. No saying it and NO spelling it:) Thank you for expressing your understanding about my feeling it IS MINE….MY disease. As I was writing the post I wondered if I would get backlash from folks, saying that I needed to have consideration for HIM, as it is something that effects our loved one. But that’s just it, he didn’t know how to show love (actually came to find out, that is because he didn’t feel it, at least with me…didn’t like me, wasn’t attracted to me, and told the counselor that he “settled” the day he said “I DO.”) I am so happy for you that you have a hubby that gets it and supports you. AND I am SO happy that I now have Shawn in that role. He may NEVER be my husband, but he sure makes me feel safe, secure and loved and that’s a heck of a lot more than I got from the husband:) OFF to frolic in the sun! Have a great weekend!

      1. Hi Meg, I have read every word of this heart breaking post and all of the comments 🙁 Everything happens for a reason…I do believe that! Your EX husband was a super jerk. But think, if it wasn’t for your MS you would not have found Shawn 🙂
        Frolic well,
        Estizer

        1. Estizer,
          All I have to say is TRUE DAT!!!!:) Thanks so much for taking the time to read, and then comment! Your support is greatly appreciated!

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