Being crushed by people who are supposed to be ... - My Ovacome

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Being crushed by people who are supposed to be supporting me-no thanks.

Nesie237 profile image
31 Replies

I would like to be taken off this mailing list. I mistakenly posted a picture of an immediate post chemo pic, then a pic from about two years later. That elicited so many nasty remarks, I thought I would need my own subject- being crushed by other people on the site. Nesie 237

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Nesie237 profile image
Nesie237
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31 Replies
Yoshbosh profile image
Yoshbosh

Hi Nessie,

I can't see any posts from you with photos in MyOvacome. I'm sure no one here would post anything negative. Are you sure you posted them in this community and not another one that you follow? It's easy to wander into the wrong place!

Sending lots of hugs to you.

Yosh x

Nesie237 profile image
Nesie237 in reply toYoshbosh

Someone took the photo down, saying they weren't' allowed. This was after someone else cheered me on for the difference in the puffy face steroid look compared to how I looked two years later. Not perfect, but hoping to cheer someone who felt very badly about the effect of steroids on her weight. I was trying to help, but only got negativy and suggestions I was posting in the wrong place, that first photo couldn't encourage anyone. I don't need that. So I ask to be taken off all communities I'm registered on. Nesie 237

lorraine71-Australia profile image
lorraine71-Australia in reply toNesie237

Hi Nesie 237,

I'm sorry you have been upset, at this time we all need support and for your own health, it would be better if you do do leave the sites you feel are so

negative ,

I've been on MyOvacome for 3 years and have found the ladies on this site more then helpful and always have given me support when I have asked.

So do the right thing for yourself and cheer up.

If you decide to stay with MyOvacome I'm sure you will found the support you need.

Best wishes

Lorraine xx

Nesie237 profile image
Nesie237 in reply tolorraine71-Australia

Hi Lorraine, thank you for your kind words. Someone did some searching and it turns out I posted the photo on the depression site. I was trying to cheer a woman who was concerned about post chemo steroid weight gain and facial puffiness. I tried to show my before and after pics but the after one didn't come up. Ah, well. I'm ok. Thanks again, Nesie237

lorraine71-Australia profile image
lorraine71-Australia in reply toNesie237

Hi Nesie237

Great I'm glad it's you are ok,

keep on this site we are a lovely group of ladies

cheers Lorraine xx

Sunfleury-UK profile image
Sunfleury-UK

Hi Nesie

I'm so sorry that you've had such unkind comments especially when you've shared personal pics in the hope you'll help others.

If you look at your profile, you will see which communities you've posted and commented in. It does look as if this post (the deleted one) and unpleasant reactions took place in another community group and not in MyOvacome.

It may be worthwhile alerting the administrators of the group where this happened that you have had abusive comments. I hope they will be supportive.

If you decide you want to leave communities or delete or change your account, the best way if to use the 'help' button at the top of this page and put in what you want to do. There are a few options but the instructions are well explained.

I think most people I know who have used online forums following such a life-changing illness have had times when they have (for their own well-being) stepped away from it for a while. Certainly, I remember being upset on a few occasions and needing to 'log out' for a couple of weeks.

There is though a huge amount of experience, advice, support, generosity and good sense within this OVCA community..... it will still be there for you and for others if you decide to take a break for now.

Wishing you hope and strength, Sxx

Cropcrop profile image
Cropcrop

Hi Nessie,

Like Yosh I can't see any photos in MyOvacome. I think you may have got your sites muddled? I really don't think that anybody on here would be anything other than supportive. I'm sending lots of virtual hugs and lots of love and hope that you stay with us ❤xx Jane

Nesie237 profile image
Nesie237 in reply toCropcrop

I didn't get sites muddled because I was trying to be supportive to a woman who was very depressed about steroids on her body- puffy face, weight gain. My intention was to show how really awful, puffy, pale I looked the day I finished chemo, and then put up a pic of how almost normal I looked 2 years later, not perfect, but my complexion was good, my face wasn't puffy, and I had lost some of the weight. I was able to put the first pic up, but couldn't put the second one up. I got a message telling me photos weren't allowed. Then the nasty stuff messages started. I've been on this site for maybe a year and I don't think I've ever gotten that many messages in total.

Microbabe profile image
Microbabe

I check in here all the time and have not seen any photos I love to see how poeple have fought this horrible disease and got better so I cannot imagine anyone on ovacom posting anything negative .... we are all in this together and support interest and caring is what this site stands for ..... I'm so sorry that you have received negative comments that is awful but like others have said I'm not so sure it would be on here 😳

Nesie237 profile image
Nesie237 in reply toMicrobabe

I appreciate that you are trying to be positive, maybe the reason you don't see photos is that someone, I don't know who told me this, said it's not allowed. Nesie237

kittie profile image
kittie

Hi Nesie I can tell you no one on the Ovacare or Ovacome site would be that nasty. We are all here to help and encourage each other with this journey we are all on . I love women putting up photos of themselves no matter what part of the journey they are at . I would not have the confidence to put a photo of myself up ,I hate cameras and end up making faces. Hold your head up high and people who make nasty comments are just that nasty and are not worth wasting our time and energy on, life is to precious. Kittie.

koffeekat99 profile image
koffeekat99

That sounds so strange given what a positive site I've found this to be that it makes me think that it wasn't anyone in this group. It depends how you got the responses as to what's happened. But it does sound like a troll has somehow picked up on your photos and tried to make it look like it came via this site.

Don't leave the site on the basis of this experience. Certainly highlight it. But if you notice anything else like that report it.

Nesie237 profile image
Nesie237 in reply tokoffeekat99

I will do that. I thought it was out of character.Nesie237

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Dear Nesie

I'm so sorry you have had such an upsetting experience. I am one of the administrators for MyOvacome and the photos you describe would not be taken down by us, they would be fine for this forum. Please do contact me if you would like me to look into this with HealthUnlocked for you.

Best wishes

Anna

Support Service Manager

Nesie237 profile image
Nesie237 in reply toOvacomeSupport

It would be nice to know what really happened, who said I couldn't post a photo, etc. Nesie237

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply toNesie237

Dear Nesie

Of course, that is not a problem. I'm away from the office most of today but I will look into this further tomorrow and come back to you.

Best wishes

Anna

You've had what sounds a really horrible experience, but it wasn't on the Ovacome section of Health Unlocked.

If you click on My communities at the top, you'll see which communities you're signed up to and the one where this happened. You can just untick it.

We all need each other too much to have you leaving us on the basis of a misunderstanding. xxx

Nesie237 profile image
Nesie237 in reply to

I did that but have since decided to stay on Ovacome. Thanks for the encouragement, Nesie237

Microbabe profile image
Microbabe

Had a look around and it looks like your post with the photos was on a site called action and depression I am not a member of this site so can't see the replies etc ..... I can't see any photos either but reading the post it looks like it's the one.... hope you get it sorted .... here On ovacom we are nothing but supportive I was not afraid to post a pic of me with no hair as I knew it would give me a boost... it did it gave me the confidence to go out in the real world lol ... stay with us Nesie 237 we are the good guys 🤗

Yoshbosh profile image
Yoshbosh in reply toMicrobabe

Go Team Ovacome!!👏

Tesla_7US profile image
Tesla_7US in reply toMicrobabe

Shellygirl, thank you for tracking down the apparent root of Nesie237's bad experience. I LOVE THIS FORUM!!!!! I have never encountered a negative word amongst this group of outstanding women. In fact, I belong to a real-time, meet in person support group here in Seattle which wasn't helping me too much. I find the commentary on this site to actually be far more useful, so I quit going to the one that's 3 miles from my home!!!! I find people here to be so compassionate, informative and caring that I'd rather communicate with this wonderful group!

Nesie237 profile image
Nesie237 in reply toTesla_7US

That's great that you find the forum so helpful. I think I'm answering someone else's message. I'm staying. I was wrong. You all are great. I used to live in Kent. Where do you live? Nosy me, Nessie 237

Tesla_7US profile image
Tesla_7US in reply toNesie237

Seattle, Washington, USA

Microbabe profile image
Microbabe in reply toTesla_7US

I was so moved by the post and was sure that no one on ovacom could be nothing but supportive .... at least we know what happened now and hope that Nesie 237 feels reassured enough to stay 😊

Nesie237 profile image
Nesie237 in reply toMicrobabe

Thank you. I'm very glad too. Nesie237

Nesie237 profile image
Nesie237

Shelly girl, thank you for doing that. I really appreciate it. You are the good guys. I guess the person I was replying to was depressed because of how she looked. I was horrified when I saw my photo, but I'm still alive, as far as I know healthy. All my scans and blood tests are always negative. Nesie237

LouiseOvacome profile image
LouiseOvacomeMy Ovacome Team

Nessie, I am so sorry to hear this. Please can you call us this morning on 0207 2996650. We would appreciate understanding what has happened and if we can help.

Thanks

Louise

Nesie237 profile image
Nesie237 in reply toLouiseOvacome

Hi Louse, I live in California so maybe that wouldn't be practical. But thank you, Nesie237

Steghart profile image
Steghart

I am so glad this has been sorted out as I could not believe anyone on this site would behave this way! I have had nothing but kindness and support here, I would be so sad to think that anyone would leave this community. Xxxx

Nesie237 profile image
Nesie237 in reply toSteghart

I am glad too. Thank you for the supportive words. Nesie237

Mrs_Atko profile image
Mrs_Atko

Likewise I read this post and just could not believe anyone from here could have caused such a horribly upsetting reaction! So super pleased to hear it's been resolved and you're sticking around Nesie...we're a good bunch 😇

Jemima xx

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