At wise-up 2014
Sometime last year, I read about an advocacy workshop for women living with HIV organized by Sophia forum. I was dealing with depression at the time so I was a little bit reluctant but I applied anyway. I got confirmation that I would be attending and I was excited as well as nervous. Getting to Manchester, I met 23 other women who were lving with HIV and it was a weekend of learning and interaction. It was interesting and inspiring to hear and share our stories as well as learn about our rights and be aware of support that is available for us as women living with HIV to live and manage well. While there, we developed strategies on how we can effectively participates as advocates in our various communities after we leave Manchester. I left feeling very informed and energized and yet I was a little nervous as it was taking a big step ahead for me.
Being a Sophia Forum Board Member
I asked additional questions about Sophia forum while the workshop was on and I was told about a vacancy available for a trustee. I applied and I was accepted to be a member of the board. I was excited and then I thought what to do now?
Depression, Insecurities and Self- doubt
I had been dealing with depression so I was low on confidence at the time. I was really nervous and when I saw the profile of other members of the board, I thought these women have years of experience in national and international development. What then would I really have to offer? I caught myself and thought I am a woman living with HIV, I told myself. I have had a lot of unique experiences and skills before I was diagnosed that could be useful, plus I applied for the role and was assessed as fit, so I must have something to offer surely. I attended the first meeting. Members of the board were very warm and supportive and asked me to ask questions if I had any queries and I did make some significant contribution as well but I was so worried and felt totally out of place with hardly any idea what they were talking about even when the board kept reassuring me. Afterwards I thought to myself this is new and with everything new you just need time. I thought “I think I am being a little bit hard on myself “so I said to myself “go easy” and I did.
Attending events and networking
Subsequently I started getting engaged with the process and slowly gaining understanding of where we were as an organization and what we are doing as well as contributing my part. I volunteered to be involved with fundraising even when I didn’t have any experience but a member of the board with more experience was supporting me. When there were opportunities to attend events, I went, sometimes on my own. Through those events I met other people and my network increased.
Thinking about quitting
I remember one instance where I went for an event and introduced myself as a board member. I was asked if I could speak for 5 minutes. It was so unexpected and I was so nervous that I spent the whole time at the event ruminating on what I was going to say. I had learnt about public speaking once but the nerves took all reasoning out and I couldn’t remember a thing. When it was time for me to speak I was so nervous that I was literally shaking and thinking I am making a fool of myself. Afterwards I couldn’t wait to leave as I really felt I had made a fool of myself. I thought maybe this board membership thing is really not meant for me and had a good mind of quitting.
Having opportunities to grow
Then my mentor gave me an invitation to attend another program and this time I knew I wasn’t going to say a word. I went and I didn’t say a word until towards the end when I really did have something to say, and then I thought to myself well maybe I don’t need to talk all the time and that’s okay. What I did was I attended a lot of events and what I found was that every time I went, I learnt something new and the various things I learnt increased my knowledge, widened my scope and enabled me identify gaps and see opportunities for growth . Plus, I met new people and increased my network.
Starting a support group and being a patient rep/peer group co-ordinator
In August 2014, with support from Forum link, (Paul) who helps HIV patient groups set up, we had our first meeting in Peterborough to start a peer support group www.ourspacepeterborugh.org.uk. It is the first of its kind in Peterborough and I currently co-ordinate the group.
As a patient group, Ourspace is affiliated with our local community voluntary service PCVS, who provide us with ongoing support in terms of capacity building. Through that same service we have been made aware of other community groups who run services that are sometimes beneficial to our members to be involved with. We introduced ourselves to the HIV clinic in Peterborough and we are in the process of building a relationship
At the Wise-up training, the facilitators offered to provide us with personal on-going support should we require any. I took it up and I have two mentors. Sylvia Petretti, who co-facilitated the Wise-up training, regularly provided me with opportunities to attend events. She believes in me and she constantly tells me “ you can do it”. A lot of times, even when I didn’t believe in myself she believed in me and that encouraged me to try, even when I wasn’t feeling like it. Paul Decle who I met at one of the events I attended also believes in me and provides me with constant support especially with running the patient group. It was Paul who enabled me realise I had become an expert patient, to my surprise. My mentors constantly provide me with opportunities to grow, which I take up and keep practising. I also learn a lot from their experiences and counsel.
I was asked if I could speak about the Wise-up training at the Women Know Best conference last December, and I choose to write a poem which I recited. I got a very good response and I grew in confidence. Afterwards, I was asked if I could present at a Public Health England (PHE) event on sexual health and women living with HIV. I researched and checked with my mentors over the phone as well as writing and emailing a copy separately to them both for review. When I got to the event, I was initially nervous and I was thinking I didn’t want to make a mistake. I caught myself and told myself I was there to deliver a message, I was representing other PLWH and that was what I was going to do, then I calmed down and spoke with conviction from my heart. I had a very good response and I actually enjoyed speaking. Afterwards I got another invitation from PHE and this time around they specifically asked for me. Wow! I thought they must love having me then. Even though I had no idea what the topic was on first look, I knew I just needed to discuss with some other people who had more experience than myself. So I sought my mentors Sylvia and Paul who had a lot of ideas for me. Once I understood what it was about, I carried out further research and used some materials from previous events I had attended and from valid websites and my experiences, as well as experiences of other people living with HIV. I spoke at two events which were national and I must say after that I was feeling so confident it does finally feel amazing.
I am a very spiritual person and I have a strong faith in God who I truly believe always looks out for me. I have learnt to view life as a learning process. I constantly read secular and spiritual self-help materials that enable me develop my character and improve my skills and knowledge
Looking after self
In all of this I am aware that it is very easy to get overworked and burnt -out and I must say sometimes I do. I have learnt overtime, to listen to my body. It speaks to me and I recognize the signs for when it is time to take a break. I am in counselling and taking anti-depressants to manage depression. Now I try to fit self-time into my routine. I am constantly in touch with nature and I walk a lot to keep myself fit, plus it’s economicalJ. I love clothes, listening to music, going to the dance club once in a while to unwind and I have learnt to appreciate regular silence
Safeguarding and talking about HIV
I must say that initially I was worried about meeting people who may know me when I attend events. That means they will know that I am living with HIV. While at the Wise-Up we discussed safeguarding and I picked up an idea from there. Use an unidentifiable name to express yourself, so I choose Laura which is my middle name but it is not identifiable. Reason is that even though I have grown to accept HIV as a part of my life and I am now comfortable living and managing it, I am yet to tell my family and friends. However I am passionate about being an activist. This way I am able to express myself while also safeguarding myself. When I go for any events where I am meant to speak, I inform them that I am okay to be called by my identifiable name face to face, that is because that way I have control over who I talk about HIV with, plus I realised that these are confidential spaces and professional people so even if I were to meet someone I know, they would also know about confidentiality and so will not be discussing me outside of the meeting. I choose to use Laura for anything in print, as that is outside of my control. I don’t have to worry about been identified and I get a chance to pass my messages on and be an activist J
Being a facilitator
Now I am working on being a facilitator at the second wise–up workshop and even though it is my first time, I have learnt to be easy on myself as I have found that “mistakes” are an essential part of the learning process and time, practice and dedication brings experience. I must say like before, I am a little bit nervous but I am more excited because what I will be doing is participating, sharing and learning and in the end that that is what is important! As my mentor Sylvia would say:
“If you want to be good at anything Practice! Practice!!Practice!!!”