I am really sorry for this but have to vent my anger somewhere and know you are all good listeners. I have just had a internet fight via personal messages on facebook, One of my so called friends basically said that if I didn’t drink diet juice I wouldn’t have MS, what a (deleted word) eh? She was trying to say that one of the ingredients in it (I can’t remember the name) causes MS. I read up on it and whatever it is in the drinks can cause similar symtoms to MS but not cause it. I tried to explain this to her but she just got really nasty sending me a message ending with you were never much of a friend anyway. I cannot believe people can be so nasty and ignorant. I have now blocked her so she cannot contact me again so I don’t say something to her that would get me into trouble. Again sorry but I am so mad!
There is nothing to be done about people like that except to draw a line and move on. Try not to let it upset you too much. It is a nasty thing to happen, but please don’t waste one more moment of sweet life on this person if you can possibly help it.
Clearly not a friend Hun…how annoying and clearly she does not understand our life and the way this disease changes things. My mum always said to me you will find out who your friends are in life and this is an example. Don’t let her grind you down…lift your head up high , it’s her loss not yours and things have a way of coming back on nasty people at some point in their lives. She’s nota friend who deserves your friendship x x x
Some friend she is ,but MS has been around for many hunderds of years long before aspartame, so how dose she expaine this then, dont let her get to you a,real friend wouldnt treat you like that,
Yes Pat thats what it was, sorry I couldn’t remember and your right it is bad press. Thank you all for your comments and you are right I should just let it wash over me and to be honest the nasty comments I can do that with it is the total ignorance that winds me up. Only very close friends on facebook know my situation and I tried to explain to her that her info was untrue but she does not care and clearly thinks she is right. God knows how many people will read that post and believe it and I do not want everyone on there knowing that I have MS cause its not their business, so I cannot write anything publicly. Think I will get a true friend to comment on my behalf to let people know that it is not true. Luckily I have started to calm down now. Thanks again
Pat she was actaully telling me that it causes MS not just symtoms and thats what she has posted on FB. Basically people are getting wrongly diagnosed because they drink that stuff and when they stop all MS would be cured, I mean you couldn’t make this stuff up how some people read an article become experts and then totally lie about what they have read unbelievable. Not to worry as you say she must be a genuis lol. She is now out of my life and I will never speak to her again. I know who my true friends are and they are brilliant
Hi Claire I’m sure you can delete the post on F/B if you click on the two little heads at the side like comment share & time it was posted I think it comes up with a x press on that then it will come up delete/hide post have a go it might work. Best of luck x
It’s a debunked internet HOAX, that’s been doing the rounds for years. Aspartame causes neither MS, nor “MS-like symptoms”.
It seems sometimes friends cannot accept we’ve been diagnosed with something serious, and there’s a need for them to believe it’s all a mistake, and that a few simple lifestyle changes will make it go away. I’m sure they think they’re being positive and helpful, but it’s absolutely infuriating, isn’t it?
I know it’s not identical, but I have (or perhaps should say had) a friend whose gems include: “Isn’t it lucky you’re unaffected?” (OK, I’m still walking…so far, but show me anyone who’s “unaffected” by the onset of an incurable degenerative disease…) I’ve also had to listen to a load of complete tosh about some foolish woman who let herself be stung by thousands of bees (Yep, sign me up for that…NOT!), and - after a Summer during which I was not only ill, but lost my job of 23 years, and hence my only income: “Have you had a nice Summer?”
It’s a great shame, as I’ve known her since infant school (I’m now 46). But I’ve had to reluctantly accept those things I used to value about the friendship are not worth the constant aggravation. I’m sure she believes she’s being supportive, by totally ignoring that I’m either ill or out of work, and pretending I must be having a great time.
It’s not my style to wallow in self pity, but I would like just a little bit of acknowledgement that no, everything’s NOT fine: I’m not unaffected, and I haven’t had a lovely Summer! Duh!
The other side of the coin is you may find people you’d never thought of as especially close friends do come up trumps in a crisis. It’s strange, but you can’t predict who’s going to drag you down, with their totally bizarre reactions, and who’s going to be a pillar of strength. It’s a tough way to find out who your real friends are, but it’s not always the ones who’ve been gushiest with the hearts and flowers over the years.
Its not only friends that can have a strange reaction to ur illness…my 24yr old daughter, who I have been very close to all of her life can’t seem to cope with my illness and has completely turned on me because I can’t be there for her as I’ve got lots of stress and told her I can’t take any more of her problems on. No one can predict how others will react to our illnesses but a bad or thoughtless reaction is very hurtful. Put your effort into the friends that deserve it
I’m so sorry that your ‘friend’ has shown that she is very short sighted and not a true friend to you. There’s nowt so queer as folk, as they say.
Facebook is one of the worst places for scaremongering and unfortunately there are a lot of gullible people out there, who believe everything they read. I like nothing more than checking on Snopes.com to make sure these things are a load of rubbish and then posting the link to it in reply to their (pass this on) post. It doesn’t stop it happening time and time again but it make me feel better!
The Aspartamine causes MS is on there and there is a very long response to it which explains where the ‘story’ came from and why it’s a load of old tosh. Maybe you can get another friend to post the link in reply to what she posted.
It’s very strange that “friends” think they have all the answers, espeicially that I find even neuros, ms nurses and GP’s struggle to know the answers. These " friends" think that you are being ungrateful that you don’t take their " miracle cure" ( that they have found on the internet ) seriously and that you are not accepting their help. Unfortunately I don’t think anyone really can understand ms unless you have it and live with all the effects it has on you. My husband is very supportive of me which is great but he admits that he doesn’t really know how I feel when my muscles spasm and I feel like I’m choking, when my feet and scalp burn or when I can’t go to the toilet easily. A real friend wouldn’t get into a nasty argument about something which only you truly know about, a real friend would listen, maybe offer an opinion but certainly not try to force it onto you. If she doesn’t apologise for her thoughtless comments then you’re most likely better off without her in your life. You don’t need that.
i am so grateful for my gp-whom i have known for 20years. when i was diagnosed he told me that he had medical knowledge but i had the body so together we would reach a suitable plan of action. i appreciate his honesty as he does mine. false hope and promises just lead me to shake my head in disbelief! (that indicates that i have heard all about the ‘cures’!)
x x x