The role of support and health communities for people living with chronic and long-term conditions…

Hey Everyone

Sorry, I have not posted for a bit but I have been unwell as my Dad has kindly given me his cold – which has made me feel very unwell and extremely lethargic.

Today, I would like to discuss the role of support groups and other health communities out there for people, like myself who have chronic and long-term health conditions.  These online support groups and communities, for me, has been a god send – as I find myself feeling unwell all of the time, as well as having the dizziness 24/7 and 365 days a year and therefore unable to really leave the house on my own, a lot of my time is spent alone – leading to feelings of loneliness and isolation which can then lead to feelings of depression.

As a result a lot of my time is spent online where I am able to talk to others out there who, although might not have the exact same conditions as me, sometimes have similar symptoms or experiences as me.  Communities or ‘groups’ even exist on social media sites such as Facebook, where in fact I am a member of a several groups, some of which are for people living with chronic and disabling dizziness.  No one, so far whom I have met online, has the exact condition as me, however, this has not meant that I find them any the less useful, or not able to get support out of them – many of the people whom I have met have become great friends of mine, and can still relate to what I am going through in terms of the dizziness as they too are going through something similar.  One of the groups that I am a member of, even have Skype meetings, giving us the chance to actually talk to one another instead of constantly typing answers at each other!!

These sessions, are something which I look forward each month with great enthusiasm – it doesn’t just give me the chance to speak to others about what I am going through with the dizziness, and to gather information and support from these terrific women but also gives me the chance to have a laugh and a giggle with people other than my parents!  Don’t get me wrong, I love my parents dearly and they are a fantastic support, but it does get very isolating just speaking with them day in and day out.

I have also found another very useful too online – an online health community called PatientsLikeMe.  If you would like to know more after reading this then please find the link in the ‘Blogroll’ section.

Information regarding the community - how it works

PatientsLikeMe was founded in 2004, and provides patients with all kinds of conditions and is basically a health sharing website for people with a variety of conditions, hence ‘patients’.  Patients are able to enter data regarding their conditions – such as the condition itself, or even multiple conditions, symptoms associated with said condition or conditions and even the treatments that the patient has taken in the past as well as those treatments that are presently being taken.  In addition, every now and again, members are also asked to complete several questionnaires regarding their mood and quality of life as well as questions regarding symptoms experienced – by answering these simple questions members create helpful charts and timelines to enable users to watch the progression of their condition over time – using the site, members can also add their care team to their profile, to keep their doctors up to date with everything.  There is an even a tool called ‘instantme’ where in 140 characters or less are able to type in on how you feel that particular day – there are 5 options to choose from – ‘very good’, ‘good’, ‘neutral’. ‘bad’, or ‘very bad’ – and then all you have to type in is why you feel that way!  Simple!  Myself, I use the ‘instantme’ tool everyday, as I find it an invaluable tool to track the progression of my conditions and to see if there has been an improvement or deterioration in my symptoms.

Using the site you are also able to find patients just like you – well I haven’t, but that’s another story, but for conditions such as MS or Depression, there are many members with that particular condition, and can even search patients with the same symptoms as yourself, as well as searching for those with the same treatments, and even search for those within the same geographical location – or can even search for those using a combination of criteria.  And furthermore, using the tools such as the symptom or treatments reports you are able to learn and find out and see what others are experiencing – as well as being able to ask questions, share tips that you have picked up along the way and to support others using the forums – which they are many of as well as through a private messaging service.  Basically PatientsLikeMe is a great social media site, like Facebook for those with long-term health conditions!!  If anyone reading this has such a condition, I would more than recommend joining – even though I haven’t found anyone else with the same condition I am still finding it a very useful tool to track the progression of my health – and can even print out ‘doctors reports’ showing the severity of my symptoms and any information that I have entered to show them how I am doing.

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4 thoughts on “The role of support and health communities for people living with chronic and long-term conditions…

  1. Great blog entry, Rhiann!!! I will have to check out the “patients like me” web site. I am also glad that you look forward to our meetings each month. Friendship and laughter can be very therapeutic for us.

    Love ‘Ya, Girl!!!

    T ; )

  2. Thank you T for your continued positive feedback and all your support.

    Yes, I do look forward to the meetings each month, they brighten my day and make me smile – and agree the friendship and laughter is certainly therapeutic!!

    Love ya too!!

    Rhiann

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