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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Social Self-Care

Author: Gaynor Leech, Founder of L-W-O

Social Prescribing or Social Self-Care


Social prescribing or social self-care the new buzz words to beat social isolation.  Yet GP’s in the UK have been able to refer patients to Gym’s and Slimming Clubs for several years.  At last mental health is beginning to be taken more seriously and with our own government finally giving us a ‘minister for loneliness.’   There is an awful long way to go. Social prescribing like art classes, dance classes and many more activities will hopefully become the norm to allow patients to go and meet other people in the same position as them and have a chat and a cuppa making this a social activity.  There are people that go through everyday without speaking to someone else.  This is such a sad reflection on our society so next time you go to your GP ask them if they can prescribe an activity or club for you to join.  Far better than taking anti-depressants.

What does this have to do with lymphoedema?  How many times do those of us who are a part of the LSMC (lymphoedema social media community) hear new members saying, “I am so glad I have found you, I thought I was the only one with lymphoedema.”


Lymphoedema is not just one problem


Having lymphoedema comes with many problems the physical implications range from mild to severe and have a tremendous effect on our bodies.  But what about the mental health problems that come with lymphoedema which are:

  • Anxiety
  • Frustration
  • Pain
  • Body Image
  • Not being able to find clothes/shoes
  • Healthcare professionals who didn’t cover lymphoedema as part of their training
  • Family, friends who all seem to think you will get better
  • Financial problems

These are just a few of the many things that those of us living with lymphoedema must deal with.  Some of us are better at dealing with this than others.  On a personal level I am so grateful to have a large family and friends who I can talk to, go out for a drink, or a meal with.  I am also lucky that if I want to try something new I have no problem walking into a room on my own.  But this hasn’t always been the case.  Over the last five years I have met many people and I call them my friendly acquaintances these are the people I have met on my lymphoedema and L-W-O journey.  One of my biggest achievements this year was being able to go to the #BLSConf2018 because five years ago I wouldn’t have had the knowledge or understanding to be able to cope with the sheer amount of information, neither would I have had the confidence to do this on my own.  Like many of the meetings, seminars, conferences I go to, I now meet old and new friendly acquaintances so never completely on my own.

I do realise this is not something everyone could do, and this is why I am a big advocate of social prescribing or as I would prefer to call it social self-care.    Fortunately, I live very close to Coventry and there are many people and organisations working towards a common goal to combat social isolation including those of us living with a chronic illness like lymphoedema.  I am thrilled that myself and L-W-O has been invited to be part of this movement and I sincerely hope in the future more of our local members will be able to join us.  From this I also hope I will be able to encourage L-W-O members who might feel unable to get out of the house, to take up an activity, resume an activity and meet new people.

The LSMC place a great deal of emphasis on self-management of lymphoedema and this is extremely important to our physical health because by taking care of our skin, creating a healthy lifestyle and keep moving to keep our lymph fluid flowing this helps us to stay well and control our lymphoedema.  However, it is equally important to take care of our mental health and this is where social self-care is important.  By joining one of the many groups within the LSMC you get to speak specifically about lymphoedema you can talk to people that understand how you feel.  You learn about lymphoedema and in some groups you learn about the research, what’s happening in other countries, you get tips and advice and importantly they are there for you 24/7, 365/6 days of the year.  Some of the groups also offer local support groups, swimming opportunities or even a meal out.


Join a group or volunteer


I have never had spare money to give to charity, what I have often got is time and I have probably been volunteering since my early 20’s in one form or another and for me personally this helps me get through the rubbish days I experience.  Some days it takes a big effort, but this is me and I enjoy meeting the most amazing people.   One of my biggest pleasures is writing, it takes away my physical and mental pain and gives me a great sense of achievement whether I publish or not. Certainly, it has helped me deal with my lymphoedema.

Social self-care starts with us


Social self-care starts with us learning to love ourselves, which will give us the confidence not to lock ourselves away at home, not to let our lymphoedema completely consume who we are.  There are so many activities available to us, often free to join, some with a small cost such as art, aqua, craft, dance, knit and natter, lunch clubs, laughing yoga, netball, support groups, walking groups the list is endless.  So, trawl through the internet, or local paper, listen to your local radio station find out what’s going on in your area.  Never be afraid to ask for help. Ring a friend or family member see if they will go with you, they might like to do something new. The initial step forward is always the hardest but finding a new activity, group or simply a cuppa with a friend is good for both mind, body and your lymphoedema.



Please remember: Thoughts and interpretations are mine.


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