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Feeling pretty upset today :(

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Lauren

Lauren

Well-Known Member
Relationship to Diabetes
Type 1
I joined a group on facebook about healthy eating and today I mentioned I was Diabetic and got a tyrade of people telling me it was my own fault, that it was because I am fat (even though I was underweight when I was diagnosed at 6 years old) and that if I eat better I can cure myself. Some of the messages were really unkind (quote: Diabetes is a FAT problem and nothing more) and now I just needed to let out my feelings on here because you guys are the only people who understand what it feels like.

I am so so fed up of Diabetes. I wish there was a cure but I have to live with it. I am resigned to the fact that I'm not every going to have children because I will find it too difficult. I literally have no support from any kind of healthcare professional as they discharged me from my Diabetes clinic because of a mistake on their end where they have me down as missing three appointments in a row. I have also been battling with depression on and off for 5 years. Usually I am quite optimistic and find other things to focus on but today my Diabetes and people's lack of knowledge is just making me so upset :(
 
Hi Lauren, if up you're like me you will realise that whilst there are some lovely people on Facebook, there can be some right nasty people there too. My advice for you is to scroll past the nasty comments and ignore them. Some people just comment without thinking and realising how hurtful they can be. Don't let them get you down ((hugs)) 🙂
 
You're right! Thanks for this good advice. I have now left that group as I don't need the negativity. Not sure why I ever thought facebook was a good place for support really, when I have this group and the love of my friends and family. I feel a lot better already.
 
I think Cat is right, some people like to hurt others, and if you can it's best to pity them because their lives must be pretty bad to get their jollies that way. That said I know it can be difficult when you are already feeling low because everything just gets on top of you. So a virtual hug from me.

Could you appeal the decision from the clinic? I don't think I could cope with it all without their support, and I think it's important to get the right care. Hope you feel a bit better soon. If it helps at all, I'm a very positive person but this thing has had me on the floor a few times, it's hard work and ignorant people can make it worse. A woman in Starbucks treated me to a mini lecture because I was eating a cookie ( and had my glucose meter there), apparently I was irresponsible, and costing the NHS far too much money. I was hypo at the time and wasn't sure whether to cry or wipe the floor with her. She got a verbal tongue lashing, the force of which surprised even me 🙂
 
Lauren said:
You're right! Thanks for this good advice. I have now left that group as I don't need the negativity. Not sure why I ever thought facebook was a good place for support really, when I have this group and the love of my friends and family. I feel a lot better already.
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Good one Lauren, you don't need that negativity in your life when you've got support right here. Facebook has it's uses but not really for support. I had joined a group myself a few months ago and last week removed myself as I didn't like what was happening with it. Particularly if you're feeling low, more than ever during those times you need positivity and support. You'll never find complete positivity there. You'll definitely find it here though. Keep your chin up :D
 
@Kookycat Oh my gosh! What a horrible woman! I am the sort of person who would burst into tears if this happened to me. I am glad you sorted her out!

What happened re my Diabetes Clinic is this: I had a good, very supportive clinic in Aberystwyth but when I moved to Newport I had to move to a clinic in the Royal Gwent Hospital. The RGH is actually about 20 miles from where I live and I don't drive. However, three minutes down the road from me is a train station which can take me directly to Cardiff Central. I wrote to Aneurin Bevan explaining this and asked if I could be transferred to the clinic in Cardiff, which is actually better equipped for pump users so I was really hopeful. Unfortunately they would not allow this and so I begrudgingly accepted that I was going to have to go to the RGH. Over the next few months I could not attend any of the appointments they sent me due to transport issues or work commitments. I phoned them every time and cancelled but did not rearrange the appointments, which I later found out I was supposed to do. Around Christmas time I got a strongly worded letter from Aneurin Bevan saying I had been permanantly discharged from the RGH due to bad attendence but they hoped I would ask to be re-referred to them. I was so confused! Not sure why they didn't just not kick me out. Anyway, I then went out of my way to go to the GP and ask them to re-refer me. One was confused and said she could not do it. Another GP told me she would re-refer me but in the meantime I should see the Diabetic nurse, which admittedly I still have not arranged. I have heard nothing since. I feel distrustful of Aneurin Bevan since the last contact I had with them so just feel a bit stuck really. I have had no appointments for eye checks, I have never had my feet checked in my life, and I have not seen a Diabetic specialist since I lived in Aberystwyth in summer 2012. I feel really really miserable but I also know that the only person who can fix it is me. I'm just unsure of where to start I suppose. On the bright side the RGH is still unknowingly paying for all my pump supplies so that's good.
 
Could you write to the clinic Lauren and explain where they went wrong with the appointments, perhaps with the support of your GP? Oops! you got in just ahead of me. :D Maybe if you explain the transport situation to your GP s/he could refer you to Cardiff instead?

You're right about Facebook, you definitely don't need that kind of nonsense. I have an account but I haven't looked at it in months, I find it too childish and really DO NOT like the way they keep resetting my preferences.
 
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Oh I forgot to mention that somewhere in the middle of all this I emailed my new nurse repeatedly about pump supplies but never received a reply. When I went in to ask about it they admitted they were having staffing problems which is why no one had contacted me. It was this point they told me about how to order my pump supplies.
 
@Alison: I asked my new GP initially about Cardiff but he said no :( however I have had a new GP since then who is slightly nicer so maybe it is time to go back and explain my situation. I think something needs to be done. Also my husband is a solicitor so maybe he could write to the healthboard for me.
 
Idiots! But that's their little game and they are just showing their ignorance, so ignore them. I wouldn't mind knowing just how 'healthy' their diet is (not that diet is associated with the onset of Type 1), I bet we could probably teach them a thing or two - fruit smoothies always springs to mind for me!

Facebook is too unregulated to provide support in a safe and welcoming environment - even the closed and moderated groups often fall short. I am a member of a few, but I am generally quite confident about my diabetes and life in general, and have been dealing with trolls for 20 years (I used to moderate a depression 'Usenet' group in the days before forums 🙂) It's too easy for those who wish to, to abuse someone and then slink away.

I'm very sorry to hear you have been hurt by this, but glad to hear your spirits are lifted now 🙂

It is atrocious that you are a pumper left with no clinic support, I hope you can get things sorted with the new GP.
 
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Lauren said:
@Alison: I asked my new GP initially about Cardiff but he said no :( however I have had a new GP since then who is slightly nicer so maybe it is time to go back and explain my situation. I think something needs to be done. Also my husband is a solicitor so maybe he could write to the healthboard for me.
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Both are good ideas. Try the doctor first, but it's good to have a tame solicitor on hand if needed.
 
Oh heavens, Usenet! That brings back a few nightmares. :D

Usenet is like a herd of performing elephants with diarrhoea. Massive, difficult to redirect, awe-inspiring, entertaining, and a source of mind-boggling amounts of excrement when you least expect it.
— Gene Spafford, 1992
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It is such a shame that some people have this blind vision and a pure nasty streak!

Now imagine if the tables were turned and they were to develop diabetes?

Wonder if they would still have that reaction?.....I think not! 😡
 
I am so sorry there are still some very narrow minded people in this world and you have come across them. Unfortunately you will get people like this, but you know the truth as do anyone with diabetes. They are idiots.

My partner suffers Bipolar and well he has come across alot of narrow minded and ill informed people. It's makes things very difficult at times but as i say to him, you don't need those people in your life if they are going to be like that.
 
I sometimes almost wish Diabetes on other people so they can see what it's like... almost...!
 
Lauren said:
I sometimes almost wish Diabetes on other people so they can see what it's like... almost...!
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Now there's an idea Lauren. I wonder how they'd cope with one of my hypo days, or worse, one of my roller coaster days.
 
Sorry to hear about the problems you have encountered on Facebook......how little people are actually aware of diabetes astonishes me. You have done the right thing in getting off there and coming on here to voice your concerns.

Regarding your healthcare team, I recently requested a referral to another hospital through my GP as I feel that 5 years since my diagnosis the health professionals involved were not listening to me and I was being 'fobbed off'. I wondered whether you could do that, especially considering your circumstances of getting to one hospital easier than another.
 
Lauren said:
I sometimes almost wish Diabetes on other people so they can see what it's like... almost...!
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Whilst I wouldn't want to wish diabetes on anyone, if they believe that it's purely about diet then I suspect that some of them may be in for a rude-awakening if they have the genes for it... I wonder what they will be saying then? 🙄
 
Sorry to hear you had this horrible experience on FB.

Also sorry to hear that your GP is so unsupportive. I thought there was patients' charter, which means you decide where you want to go for your treatment. So, if you want to go to Cardiff then the GP should try to refer you there. I have a few D-mum friends who travel for miles to go to their choice of clinic. One of them takes her child all the way from Portsmouth to Leeds
 
Northerner said:
Whilst I wouldn't want to wish diabetes on anyone, if they believe that it's purely about diet then I suspect that some of them may be in for a rude-awakening if they have the genes for it... I wonder what they will be saying then? 🙄
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The wishing game....very dodgy territory 🙄

BUT!!!.....I think anyone in that situation would want the tables reversed like I said before.

That is why I use this website as I no there is no bulling or nasty remarks!....keep your enemy's at arms distance!!
 
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