• Started 4 months ago by thinkingincodes
  • Latest reply from wannabefree
  • This topic is Not a support question

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  1. Hi, I was just wondering if anyone has some words of advice.
    I created a website, as most of you know about OCD etc.
    I put it on my facebook (now deleted my facebook) and my family have seen it. Apparently I can't help others with OCD because I'm not qualified and I could get in trouble. I meant help others as I've been through it, not like give them CBT. I wrote about what ocd is, what the four steps are, what my advice is on how to manage the OCD.
    My therapist had a look at it and said it was fantastic. And my family (a certain family member) doesn't agree with it. I thought I was doing a good thing raising awareness of OCD. I feel like I should delete it and give up...
    I can't stop crying over this. I was having a great evening until this

    Wed Jan 4 2012 22:51:11 #
  2. I'm sorry that you're so upset this evening.

    I have to say that I do agree that as you're not qualified it could potentially get you into trouble, especially if you're giving advice on how to manage OCD.

    But if you're serious about raising awareness of OCD and by the sounds of it you are, then why not do it with OCD Action? They are always looking for people that are willing to help them spread awareness etc. It would mean that you would be with an established organisation that has the backing of some of the best OCD experts in the country.

    There are many ways that you can become involved in the work of OCD Action.

    You don't have to give up, it just might be better to do it within the safe environment of an established and reputable organisation who can guide and help you so that you can develop your skills and so help to spread awareness of OCD in the most effective way possible.

    Trudy

    Wed Jan 4 2012 23:46:29 #
  3. Thanks for being so honest, I have just got a pack from OCD Action and I'm just going to delete the website, its just causing more hassle than good. I just wanted to help others from what I've been through, but I guess this way wasn't best.
    I still can't get rid of the embarrassment and feeling horrible about this though.. I don't know what to say to my family member about it...

    Thu Jan 5 2012 3:55:53 #
  4. Hi,

    My last post was in no way meant as a criticism, it's just I wanted you to be aware of the pitfalls of going it alone.

    Please, please don't feel embarrassed about it as there's nothing to be embarrassed about. Would the person criticising you have had the get up and go to try something like you did? I doubt it. Just say that you tried it, realised that it could potentially cause problems and a lot of hassle and have decided that you would prefer to spread awareness in a different way with others. But that doing the website has given you many ideas as to how you could help for instance OCD Action.

    You can help others - have a think about what talents and skills you have to offer and then perhaps contact the OCD Action office. Just for starters why not write your story to go in the Personal Story section of the website, personal stories are a great way of spreading awareness of OCD. And if OCD Action have an OCD Awareness week this year (and I hope that they do) your services would be invaluable ensuring that literature and posters were in as many places as possible.

    Thu Jan 5 2012 9:13:47 #
  5. Hi codes
    I think your family member has been very unkind and you should take note of your therapist. But I also agree with Trudy, there are many pitfalls of trying to help and advise others when you do not have any professional qualifications and all the insurance and backup which go with it. We are now even being told that if you come across a serious road accident you should not attempt to touch the casualties because you could do the wrong thing and be sued and at the same time the BHF are running a huge camapign on TV to tell everyone what to do if someone has a heart attack.
    It's the same with support groups, some are run by charities which require regular staff training, appraisals and risk assessments, some like Gemma's in Exeter are just informal gatherings of sufferers trying to help each other.
    Whatever you decide my own view is that it is wrong for anyone to put huge stumbling blocks in the way of your enthusiam to help other sufferers and to cause you to abandon the work you have started.

    Thu Jan 5 2012 11:04:37 #
  6. Hi Codes, I'm sorry that things didn't work out with your website. It looked really good. This is now making me wonder if I should dare to get my essays published... I might need liability insurance. I don't know about how that is done... I think it is rightand good that people share their experiences, and very often, it is the sufferers ourselves who can do a lot to spread awareness of what OCD is like. Mmmmm.... I'm gonna have a think about this myself... I'm using Ellipses again! That's how much it has worried me...
    Wannabe

    Thu Jan 5 2012 16:10:48 #
  7. Just a thought wannabe, what about the good old fashioned disclaimers, wouldn't this be adequate?

    Thu Jan 5 2012 18:37:15 #
  8. Avatar Image


    Unregistered

    Hi Codes,

    if it's any comfort, I think your website is fantastic.

    I would love to be able to set up such a professional-looking, well thought out website.

    The fact that you looked for a way to help others; put in all the thought and effort that it must have taken to create the website; and then had the courage to advertise it on your Facebook page...all these things are a tribute to your courage and determination to overcome the horrible illness that is OCD.

    My thoughts are that it would be a terrible shame not to use the skills and creativity that you obviously have. I think Truddles's suggestion is excellent: looking to see if you could get involved with OCD Action in some way. (They are based in London. But if you live elsewhere in the country, I'm sure you could get involved in the website or other activities in some way.) Your computer and internet skills would probably be of great use to the charity.

    Also, it was very brave of you to put the website on your Facebook page. But perhaps, if you continue with the website, you might think about ways to keep it separate to your personal life? (Obviously all your friends and family can probably access your Facebook account.) So if anyone in your family is unsupportive about it, it might be helpful to do it away from their attention. (Although, if they are not supportive, it could also be an opportunity for them to be educated a bit more about what a devastating illness OCD can be.)

    You might like to think about how you want to use the website. For example, perhaps you could use it more like a blog, where the purpose is to talk about your own experiences? (You could write a blog anonymously, so that your family members aren't able to read all about what you put on there.) Or you could set up a Twitter account. (Again, presumably you could use a username, and not put your full or actual name on there, to avoid being spied on by family members.

    Or, as a website, you could make it clear that the site aims to do certain specific things only. (For example, you could have a creative section, where readers like Wannabe (hi, Wannabe!) could submit essays and stories and articles; or people could submit their artwork, music, fiction,or personal stories.

    If the issue is about getting into deep water around giving advice to readers, then you could decide to completely steer clear of providing technical advice or information. Instead, you could put lots of links on the site, for example, telling readers that if they are looking for help and advice, they might like to check out websites like OCD Action and other charity's websites. (You could put great big adverts on your site for OCD Action, if you wanted to.)

    Someone as creative and talented as you will probably be able to come up with all sorts of great ideas for what to do with the site.

    So maybe that could be one of the ways to go. Possibly stay away from giving out advice and information (unless you want to), and use the website more like a social site, or a place for people affected by OCD to submit creative work and share their stories.

    All of these suggestions are just ideas off the top of my head. (Please do whatever you want to do; I would just like you to know that I think what you've done with the website is fantastic.)

    In fact, if you would like any help, let me know. I'd be happy to give you some more suggestions about different ways that you could use your new website.

    Well done for doing something so creative and inspiring, Codes. I'm really impressed!

    Take care.

    Thu Jan 5 2012 18:51:21 #
  9. Hi everyone, Hi Tess, I guess I could use a disclaimer, such that the essays are simply my opinion, which they are, and not proven fact, which they aren't really, even though they go in line with ERP and CBT stuff... I've even suggested in one essay that if someone claimed to get sick after not washing their hands, they could try and sue me, and that I wouldn't settle out of court, I would meet them in court to see the case thrown out... Common sense prevailing to knock these litigation solicitors out of business... My OCD fear is that common sense might not prevail, and that I might get sued, and lose, well, not a lot, I don't own a house or anything like that. I just don't know.
    The thing is, I want to sell my work, to try and make a lemonade from my lemon, but maybe it is too risky... (I'm using ellipses again!)
    Wannabe

    Thu Jan 5 2012 19:31:07 #
  10. Thank you everyone for the replies.

    I had my cousins on facebook and they must of said something to her. I put that I am going to do a degree with the Open University on facebook from May 2012 to 2016 and as I did it via my phone it came out as 'studied' not 'studies' and she rang up my Dad saying I was saying I was qualified when if she looked at the dates she would see it said May 2012-2016 and it wasn't meant to say studied, I didnt have the chance to go online on my pc and change it.

    I don't know why I get so easily upset, I worked really hard and put all my effort into it and really enjoyed helping others.

    I feel like I've caused hassle and I have deleted the website and going to ask OCD Action about helping, if I can. Would Nimrod know?
    I got sent an OCD Action Awareness pack the other day.
    I'm also going to concentrate on my support group that I am starting up in my area. At least then I know I can help someone.
    I just feel embarrassed and humiliated that they phoned up my Dad, I was really excited to tell him what I had done.

    Also, that they would think I would intentionally say I'm qualified, I know I am not and never claimed that, my facebook degree bit just went wrong as it was via phone.
    I guess they were just concerned but I feel like I've been crushed to a small ball and all my confidence is gone.

    OCD is something I want to raise awareness with so much,(Its best to do it with OCD Action now) and I am doing a Psychology degree in May, and would eventually like to specialise in OCD. (If I can!)

    Thu Jan 5 2012 21:07:08 #
  11. Hi Thinkingcodes,

    You haven't caused any hassle and OCD Action can help. I will send you a detailed PM by the weekend. I would do it now but I've just finished a 14 hour working day and need a little time to reply fully.

    Best wishes,
    Nimrod
    Keymaster

    Thu Jan 5 2012 21:19:15 #
  12. Hello Codes,

    Just remember why you created your website in the first place - you care.

    You've not maliciously created some bogus page so people with OCD suffer more, you've created a page to try and help people.

    Compared to some of the garbage on the internet you should be proud of yourself, however you're going to do it.

    Slog

    Thu Jan 5 2012 21:56:19 #
  13. I guess I'm having a bad day. I can't stop crying over the little things and I'm frustrated with myself.
    I'm embarrassed about the next time I'll see my family members and what they will say.
    I just feel like I can't get over it (I know I will though as I've been through worse) and I just don't understand why I can't brush it off....

    Thu Jan 5 2012 22:25:10 #
  14. Hi Codes,

    Hope you're ok today

    I've been doing some "research" into OCD for a group of people, and one of my family members hates the idea. He hasn't really supported the process, and he slags of the group of people that I'm working with. But you have to do what's best for you. Now I don't think I'm in a position to comment on the website, but I think it's great you want to help others.

    But in my case, it was 'put up or shut up' in the end with this member. I had got to the point where I just took the upper hand and couldn't be bothered to even worry about it. And in the end they've lost out, because I've told them that they won't be able to see the "research" when I see it, and that they'll have to wait until other people can.

    I thought it was very kind of you to do the website for others but as the others have said there may be complications involved.

    Hope you're well

    Jon

    Fri Jan 6 2012 7:30:58 #
  15. Thank you. I'm feeling a lot better today. Someone at work asked me about my OCD as I had put the page on facebook. I guess its good to get the awareness out there and for people to realise people with OCD are actually normal.
    I'm just not going to publish so much on facebook now....I don't know wether to feel glad about the whole thing or feel humiliated..

    Fri Jan 6 2012 13:30:59 #
  16. Go for glad and don't let people push you down. What you are doing is great stuff, be proud.

    Fri Jan 6 2012 13:40:11 #
  17. Thank you so much

    Fri Jan 6 2012 16:20:32 #
  18. Avatar Image


    Unregistered

    Hi Codes,

    I think you've done nothing wrong. In fact, I think you've done some great things. You have encountered some of the problems and stresses that many of us face, in dealing with our mental health disorder / disability, aka "OCD".

    One issue that we have to deal with is what to tell other people -- and how much to tell them.

    With the internet and social networking sites (especially Facebook) it's incredibly hard to keep things private. So we have to make considered decisions about how much to reveal about ourselves online, and how open to be.

    I don't think there are any "right" or "wrong" answers, and there is no reason for you to feel humiliated. I think you would be justified to feel very proud of yourself.

    I can see (above) that Nimrod (an OCD Action moderator) has contacted you to say that OCD Action would like to get involved with you in some way. I think that's a fantastic idea; why not see what sort of things you could do, in connection with the charity?

    In terms of your website, you could use it in lots of different ways. For example, you mention setting up an OCD support group. So that could be the focus of your website, if you wanted it to be. The website could be all about the OCD support group, rather than about offering advice to sufferers. (Just an idea.)

    I have attended a couple of different OCD support groups, which I enjoyed. If you look on this website, you'll see lots of information about the existing support groups -- and there's a forum for support groups.

    So, if you wanted, you could contact some of the other support group leaders, and ask them for help or advise about setting about a support group.

    In terms of avoiding further problems with your family, you might like to think about separating your personal Facebook page from your OCD stuff. For example, have no links or reference on your personal Facebook profile to the OCD website or support group. And set up a separate, unconnected Facebook page for the website and / or support group.

    You could keep your personal online stuff separate from your OCD-related stuff, if you wanted to keep your family from watching what you're doing all the time.

    The fact that we have usernames on forums like this one helps to give us some degree of privacy. We may have disclosed some of our problems to some of the people around us, but we may be very discreet about some facts, or with some people.

    For example, I have recently disclosed my OCD to most of the people around me. (After having some degree of OCD for 25 or 30 years.) But I have not gone into any of the specifics of my obsessions and compulsions with anyone around me -- except for a couple of trusted people. With my work colleagues in particular, I have not (and would not) discuss the specifics of my OCD. I made the difficult decision to tell them all that I have OCD (recently), but I wouldn't dream of giving them any specifics. Because they are not trained or experienced to understand OCD (it's a very complex problem, that even some GPs have little understanding of). And once I reveal too much to a colleague or family member, I have no control over what they might say about me on Facebook, or Twitter, or at work, etc.

    So I made a decision to tell pretty much everyone around me that I have OCD -- but to talk about the specifics only with people who have experience or training that relates to OCD or anxiety disorders.

    But I don't think there are any right or wrong ways to deal with disclosure. I would fully support anyone who wishes to reveal everything to everyone; and I would also fully support anyone who wishes to keep their OCD absolutely secret.

    So I think you're doing a great job of handling yourself, and I think you can be proud of your achievements.

    All the best.

    Fri Jan 6 2012 18:38:48 #
  19. Thank you. A lot of people know now. I guess I just wanted people to be aware and help them understand. Most people at work do. I'm definitely going to keep my Facebook all private now. I think after a few days I'll be okay. I just don't want people thinking badly of me..

    Fri Jan 6 2012 20:15:47 #
  20. I won't think badly of you codes, in fact just the opposite and anyone who does just doesn't have any comprehension of what OCD is all about, the human suffering involved and the stumbling blocks they can inadvertently create although I know it's hard not to be upset by their attitudes. I think Londoner's advice is superb and with OCD Action on board we can really make a difference towards raising awareness and dispelling the myths about OCD.

    Sat Jan 7 2012 10:39:19 #
  21. Hi Thinkingincodes i havent yet seen your website but would love to take a look if you havent already deleted it. Please if you havent could you send me the link or name so i could look it up.

    Regards Liz

    Sat Jan 7 2012 15:49:05 #
  22. I've already deleted it, yesterday. sorry Liz x

    Sat Jan 7 2012 17:08:15 #
  23. Hi Codes, it is a pity you deleted it cos it looked very good. What you might be able to do is help OCD Action creating web pages? I don't know how it is done, but I'm thinking some ideas can be transferred across. I would certainly be happy to buy a cup with the logo on it, Calendars, things like that. It could be really good. Thank you for the optimism you've brought to us, all the feelings of how you are right now are typical of an OCD sufferer. You always have nice things to say in support of myself and others on here, and it is refreshing to read... Please do not feel downhearted about how things have been, this is how we find out the things we can do, and it is inspirational when people on here achieve things and share.
    Wannabe

    Sat Jan 7 2012 21:44:03 #
  24. I agree, I think we may have mentioned having an OCD Action Christmas card on the forum, I would buy some, I think it would be a great way of raising awareness and they could be advertised on the forum and in the autumn magazine.
    How about a competition to design a card with a year's free membership of OCD action as the prize?

    Sun Jan 8 2012 10:44:59 #
  25. OCDA Christmas cards would be great

    Sun Jan 8 2012 14:04:59 #
  26. Absolutely a good idea.
    Wannabe

    Sun Jan 8 2012 17:05:13 #

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