Meet a Carenity ambassador!

Published 23 Dec 2019 • By Andrea Barcia

Leslie, is an ambassador on Carenity UK and has been living with Epilepsy since the age of 16. Already active on other heatlh care social media, on Carenity she shares her time and insight to help other members feel welcome and more at ease. Here she tells us a little about her health care journey and how she discovered Carenity.

Meet a Carenity ambassador!

Thank you for agreeing to speak to us today. Could you tell us a little your background: where are you from, what chronic condition are you living with, etc.?

My name is Lesley, I’ve had epilepsy for 46 years and currently reside in Northern Ireland. I lived in Zimbabwe for over 46 years and re-located to South Africa due to lack of medication for my epilepsy. After living in South Africa for over 14 years and due to lack of medication, politics and other reasons, I re-located to Northern Ireland. Coming to a different country, health system, environment and weather pattern has taken a lot to get used to. I’ve also had brain aneurysm surgery recently but am now well on the mend. Epilepsy is the main condition I’ve had to deal with amongst others, ranging from Hypothyroidism, High Blood Pressure, Irritable Bowel Syndrome, Osteoporosis and more.

How has your chronic illness affected your life: personal life, family life, work-life?

I was a springboard diver and swimming champion when I was younger but hit a diving board at the age of 14. My epilepsy commenced at the age of 16 due to stress from exams, puberty and other reasons. This initially was difficult to accept and until diagnosis at the age of 17 had a major impact on my schooling and family. Life with epilepsy was a challenge, I was bullied, discriminated against and basically ‘pushed away’ from many groups, but still protected by my family who were both loving and understanding during the whole procedure.

This, however, did not stop me from going to college, obtaining a Diploma in Secretarial Studies, finding an interest in report and correspondence writing, then finding employment. I worked with a Group of Hotels for approximately nine (9) years where I completed the roles of Reception, Administration, Personal Assistant/Secretary, and general office duties. I was then independent and had the strength, patience, willpower and understanding of epilepsy to fight even harder.

How did you discover Carenity?

I have always been interested in doing research on epilepsy. When I’m given a medication, I go to ‘Google’ to find out more about the medication and side effects it has on the patient. Browsing on the internet led me to many epilepsy and health sites, social media i.e. Facebook and Twitter, where I joined Groups and offered to join up as Admin to support and give advice to people with epilepsy. I do voluntary editing for Epilepsy South Africa and during my ‘Google searches’ came across Carenity UK. This was a great opportunity to join up as a Member, give what advice I could and get more involved; I thoroughly enjoy it.

>>>Take a look at our Medication Fact Sheets

Has Carenity helped with feelings of isolation or depression caused by your condition? In what way?

Carenity has helped both me and other people gain confidence, information and hope from others with the same and additional health conditions. This has led to good friendships and general knowledge on a variety of health aspects. I have many friends through social media and seldom feel isolated or depressed. I think it certainly has helped other Members to ‘come out of their shell’ and integrate with more people over their health situation.

What is your favourite feature of Carenity?   

My favourite feature of Carenity is the Health News (part of the Health Magazine, Ed.) where you deal with several health issues, give general knowledge, testimonials, updates on medications and generally get interaction from Members during the News and Communal Forums.

>>> Take a look at our Health Magazine

What would you improve about Carenity if you could?

I would open Forums/Chat Groups on several general health topics where members can join in as a Group Member, communicate with other members, like comments and/or ask advice, questions etc. from other members. Each group would have an Admin and/or Moderator to control the settings and of course the number of members, as well as making sure all members abided by the rules for the group. This would make it more sociable and perhaps get more interaction with additional/newer members. One must think about personal experiences the community members have and create open-ended discussions and questions.

Communities are formed when their members start to bond. Members engage then for longer as they feel they are a part of the community. The more emotional support a member receives, the stronger his or her sense of community will be.

>>>Discover our Forums

Why did you agree to become one of our ambassadors?

I enjoy social media and my passion has always been to build a community, bring motivation and inspiration where required, encourage more people to face their health issues, and learn from others at the same time about their personal experiences in all health conditions. My main aim was to find another community of members with epilepsy, but by joining Carenity it expanded my view further and has covered a wide range of health queries and conditions. 

As an ambassador, how have you taken advantage of your role to help other members?

I have tried to contribute to community development by helping to drive conversations and building a sense of community. Conversation opportunities are essential in motivating new followers/members to contribute within the community. Replying to every post can make new members feel welcomed and make them feel their personal experience is important.

A sense of community happens when members feel they belong within the community, that they matter to other users and that their needs are also being fulfilled. The community feels more than just a place for information and content and starts developing its own culture. New members are often not ready to contribute. It is very common for people to join a community and simply observe, i.e. learn or wait for a suitable opportunity to join the conversation.

As an ambassador, what advice would you give to a new Carenity member?

My advice to a new Carenity member is to not be afraid when building up a support network. Join in the communication to be more sociable, don’t fear whether others do or don’t agree to your question, advice or comment. Ask people for their opinion, introduce yourself, gain the confidence to create open-ended questions or add an image to give it a more personal touch and get more people to respond. Don’t let other members upset you; should this happen then report the query or the member to an Ambassador or the Community Manager.   

Finally, remember that we all experience difficult times, but life must go on. It is vital that one joins the Community Chat/Forum and integrates with other members in order to get assistance, advice and general knowledge on one’s and other health issues. This helps us realise what some other members go through in all aspects of life and health. It is difficult to remain positive all the time, we certainly have our ‘good and bad’ days, but as a community, we must all unite and share our experiences together.   

I am grateful to my family, friends and of course all my supporters through social media. I will never give up the fight, will remain positive even though I face a few uncertain months ahead, and will love and support you all!

Everyone on the Carenity team would like to send a big thank you to Leslie for her words and for all she does on Carenity.
Feel the same way? Why not leave a comment or question below?!

avatar Andrea Barcia

Author: Andrea Barcia, Health Writer

Andrea specialises in managing online patient communities and writing health articles. She has a particular interest in the fields of neuropsychology, nutrition and sport.

Andrea holds a master's degree in... >> Learn more

1 comment

Michael_B • Community manager
on 02/01/2020

A big thank you to Les for sharing her story. What about you, fellow members? What's your favourite Carenity experience?

You will also like

See the testimonial
See the testimonial
Medicines that are at risk of misuse and dependence

Medicines that are at risk of misuse and dependence

Read the article
Hot weather: risks related to taking certain medications

Hot weather: risks related to taking certain medications

Read the article

Most commented discussions