Vulnerable, Hurt, and Angry

[Jen_nz]

Hi all, this is my first post here. I was diagnosed with MS 14 months ago. I was 20weeks pregnant with my son when diagnosed. I guess I was able to live in a bit of denial about the diagnosis while pregnant because I just wanted a healthy baby and that was more important than symptoms I had.

Since my first sign I have had 4 attacks, the most recent one I've had while on Copaxone so it's not looking like its effective for me but my neurologist wants to give it 12months. I'm not yet better from that attack even have a hit of methyl pred to try and sort it out.

I am an RN and a week ago I felt I had to tell my work mates because I needed to go on light duties due to my attack. I didn't necessarily want to tell anyone but felt I had to so I got my boss to announce it on my behalf while I was there. The problem with a ward/shift work is not everyone can be there at one time to find out. So I knew gossip would spread the word to everyone else... I just wasn't prepared for just how quickly and insensitively it would get around

I wanted to tell a close friend from work in person but she is on maternity leave and lives about 45mins away from me so it is tricky arranging time to catch up face-to-face. Also I have found there is never a right time or place to deliver that kinda news, as I'm sure most of you will be familiar with.

Anyway, after letting the info out at work on a Friday afternoon I arranged to meet my friend for a coffee/chat the following Thursday. I thought at least a week was enough time to get to her before the gossip did - but boy was I wrong! As soon as I saw her face I knew she had already been told and I was gutted almost as much as she was gutted to learn about my MS.

I was even more upset to learn that someone from work told her the very day I was meeting her and this person knew we were catching up later. So rather than stop talking about me when it was clear my friend didn't know about the MS she just blurted it out like an idle piece of gossip!

It has left me feeling hurt, angry, vulnerable and regretting saying anything at work. Now I have to go back to work this weekend and I'm dreading it because I'll probably see this particular workmate and I won't know what to say to her. I also dread all the others coming up to me to say they've heard etc.

I didn't want to tell anyone for so long because I don't want people to look at me and assume the worst, label me 'sick' or 'disabled' yet because although I'm not 100% normal I'm not dying and I'm not in a wheelchair yet (hopefully not ever).

I'm considering talking to a counsellor who specialises in long term health disorders. I tried one a while back when life was getting too much but he was useless...

So is there anyone that might have some advice or wisdom about how to face the gossips at work without coming accords like I'm a victim and not coping with this diagnosis?

Thanks, Jen

[22cyclist]

Hi Jen:

I am also an RN, and have had my own issues with the gossip around my diagnosis many years ago. The thing to remember is that sometimes you can't control these things, but it is better than them not knowing at all. After the shock wears off you will end up being just another nurse again. Still their friend, but not someone to worry over.

In a nutshell what I am saying is that this will all be a distant worry in a month or so as people will treat you no differently than a person without MS as long as you are showing no disability. Things fluctuate so much with MS that if you find it too hard to do your regular job you may have to consider getting a desk job somewhere, or a nurse advice line somewhere. There are other options. I worked another 7 years after my diagnosis. You just have to get creative.

Hoping things get better soon. Know that we are here for you. Write back when you need to vent, ask and answer questions. Join in a chat room if you would like to. We are happy to have you.

Take care
Lisa
Moderation Team

[JerryD]

I hear your dread and anger, but remember that YOU are the one with a new baby and a chronic disease. Don't be too hard on yourself (or others around you). Try not to take the gossip to heart. Take care of yourself. Good luck

[Jules A]

Hi and welcome, although sorry you have to be here also.

You know how nurses are and there is no controlling the speed and grasp of gossip.

The good news is you won't ever truly know the motivation or the context in which co-worker 1 told co-worker 2. I can only hope and would choose to believe co-worker 1 was shocked, saddened and wanted someone to share it with her rather than presenting it as a piece of salacious gossip. Either way its done and I'd move on without holding a grudge.

Be angry at the MS, not other people's inappropriate reactions to it, as there is likely to be an abundant number of insensitive things people will say, mostly with the best of intentions.

A counselor you feel a connection with would be an excellent idea as you have had a huge amount of life changes plopped in your lap right now.
Wishing you the best. Jules

[MSwhileOverseas]

Hi Jen

First off Congratulations on the birth of your son!

I was diagnosed last Feb when my son was 10 months old. I had a bad relapse that left me in the hospital for a couple of days so there was no keeping my MS a secret. When I first starting seeing people after I got out of the hospital I was so disappointed in their reactions. Some avoided my like I had the plague, some thought I would break if I lifted a finger and the ones I thought would be the most supportive ended up being the least supportive.

I realized that everyone deals with this kind of news differently. They feel bad for me and glad its not them at the same time. Like Jules A said, I don't know what their intentions are when they talk behind my back. I have learned to give them the benefit of the doubt and believe that their intentions are good even if they don't come across that way.

You can't control how others respond to your diagnosis, you can only control how you respond to them. Keep positive, show them you are the same person you were before they knew and it will hopefully be yesterdays news soon.

[Jen_nz]

Thanks all for your replies.

I do hope things are not as bad as I'm working it up to be in my head. Time will tell I guess.

In the meantime I need to find a desire to even go back to work. After my diagnosis and the birth of my son all my priorities have changed and being at work doesn't inspire me like it used to.

Before my son I worked full time and although there were plenty of busy horrible shifts I still loved my job. These days I see far more importance in being around for my son/husband/family while I can be my best rather than work myself into the ground for a big hospital that really doesn't value their nurses. When I'm at work I think I still give my all for my patients but my passion isn't there anymore.

To add to that, my neurologist keeps telling me I need to find a 'lighter' job than where I am now. I never wanted to change specialities so the prospect of finding another job out of neccesity makes me want to give it in alltogerher and find something else that inspires me...

... It's s scary thought though.