Kindness matters

[doglover57]

I am fairly new here (one year post-diagnosis) but have a comment to share after reading recent posts. If we are part of this group, we are fighting a life-threatening illness most people have never even heard of. And even though we feel horrible, we probably don't look sick. So please be kind - REALLY KIND - to one another. Thank you, Julie

[jillydabrat]

I think I know what post you are talking about Julie. I was a bit taken back when I read it because we never have harsh words on here, in fact never anything but support so please don’t be put off xx

[Swede]

Hi, that sounds like something we don't want to hear. I can only say that I find the support here has been really good, so I am sorry if not everyone have experienced that.

(I misread the doglovers57 and read " do glovers" and was really wondering what that was.Typical me...🤪)

[stillkicking]

Hi Julie,

A very good comment. This is, or should be, one of those precious "safe places" where we really can be ourselves and express our hopes and fears and our humour too. Kindness is a really essential thing.

[JojoWonder]

Nicely put. I think people forget that you can’t always interpret tone and what is simply meant as humour. Very easy for comments to be misconstrued.

Agreed Julie - Just be kind 💗

[Rachelthepotter]

Hi Julie. Not sure which post you mean: do hope its not one of mine. Don’t think so. Anyhow, we have a great administrator in Maz: if you do find a post in any way upsetting, do contact her and I’m sure she’ll sort it out.

Rachel ( MF, inter 2, on rux and EPO, now has skin cancers too. Grrrr...)

[Aime in reply to Rachelthepotter]

Hi Rachel, am I reading your post right.? Have you got even more health issues to cope with. If so I’m thinking of you and sending you loads of E hugs and you are an example to all as how to get on with things, regardless. Kindest regards Aime xx😻

[Osteomyelio]

I didn’t read that post, but just want to say I am grateful for this forum and it means a lot to me that so many of us are able to share, learn and support each other. There is no one else in my life that can truly understand what we go through on a daily basis.

[Cja1956]

I’ve found that people on this site have been thoroughly supportive, kind, and informative. I’m sorry if you’ve found otherwise. I think if you keep posting, you will find the same.

[Aime]

Oh I missed that totally. 🙀 I’m sorry to hear that it caused offence and totally agree we need to help and support one another, without being judgemental. I must admit, this is the first time (I think) that I’ve heard of any such posts, so Maz is obviously doing an excellent job and a large percentage of the time , we are helping one another.

My thinking is that I don’t know how much fatigue, pain, depression, etc someone is feeling; all that I look at is how I can make them feel a bit better, even by just saying I’m thinking about them or sending E hugs. I know messages like that helped me beyond doubt (and still do) if I’m going through a rough spell. So to end my post, I just want to say: I love you all and thank you all for advice, support, friendship, etc you’ve given me at times of need.

Aime xx😻😻

[EleanorPV in reply to Aime]

Lovely words, same as my experience . E-hugs sent for you too

[Aime in reply to EleanorPV]

Thank u.xx😻😻

[Helena303]

I heard my son and daughter discussing my disease in kitchen. Saying how worried I would die. I said I’m fine I’m here and I’m not ready to go I’m on treatment and doing fine. My sister who I’m very close to hasn’t been in touch or called me. After I told her my diagnosis. I think is all too much for her.

[Jlah in reply to Helena303]

Hi. Yes my family are finding it hard too. It’s interesting how differently people react. Some just can’t face it - but they do with time. Take care. Jacquie x

[Aime in reply to Jlah]

Hi Helena and Jlah, so sad to read your posts re how hard it is for your families. Reassure them that there’s a lot of folk on this forum who have lived many years with their MPN and are still alive and kicking. If you live in the U.K. and can go to any of the forums that Maz and her team organise that will help their understanding and reassure them.

At the forum, attendees divide into groups after the initial introduction which includes a group for family and friends. This helped my hubby a lot. I think the more you and your families know about your illness, the easier it is for all to cope and support one another. Please remember also, there is always someone on this forum you can rely on to help and support you. E hugs to you both and your families. Aime xx😻😻

[Wyebird]

Sorry have I missed something. I do hope I haven’t offended anyone

[Aime in reply to Wyebird]

Not you, definitely. I was worried too. Aime xx😻😻

[Wyebird in reply to Aime]

Thank you so much x