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Living Well – theme for 2022 National Day of Women Living with HIV

09/03/2022

“Living well means to me, being accepted as I am. For not what I’ve got, but for me as a person.”

Each year, on March 9th, the National Network of Women Living with HIV celebrate the lives of women with HIV in Australia. Together we use this day to educate the wider community that HIV does affect women in Australia; and to speak to our network about issues of importance.

For the theme Living Well, women living with HIV around Australia were asked what does living well mean to you?

“This is a theme which focuses on the importance of joy, health, wellbeing and connection in our lives,” says Kath Leane from the National Network.

“The stories of all women living with HIV are so very powerful in fighting ignorance and ultimately ending HIV-related stigma once and for all,” says Heather Ellis also from the National Network, and Positive Women Victoria.

Living well’ marks the theme of 2022 National Day of Women Living with HIV

Read these powerful and inspiring quotes from women living with HIV from around Australia. They share what living well means to them…

1.What does Living Well mean to you?

• Being able to have a life with medication and live as normally as possible.
• Being healthy, having family and friends and a strong support network.
• Keeping alive and well and safe from Covid and generally having good health and able to afford my medications both HIV and other essential drugs.
• Access to treatments and no hospitalisations. My mind and body are in harmony and so both my physical and emotional health are balanced alongside positive self-care. Living well means I have financial stability, a safe place to live and adequate food and nutrition and strong peer support networks. Living Well means I can still find joy in each day. I appreciate that due to amazing medical advances I am still here and living well and grateful to see not only my children but my grandchildren grow up
• It means living to my full potential, engaging in all activities that I desire to be involved in, taking care of my health, and making healthy connections. It also means being able to access non-discriminatory healthcare.
• Living well means to me, been accepted as I am for not what I’ve got but for me as a person. Living well means to me feeling healthy mentally and physically.
• When I was first diagnosed, I was a mother of four ranging from 8 to 18. The most difficult thing was to tell my children. Today many years later we as a family have grown in numbers as my children now have partners and children, we don’t even think about it. All my children’s partners know as do their families and for all it’s never even mentioned. Life has settled as treatments have improved, I feel liberated with no secrets and the freedom to just be nanna.
• It includes a lot of things such as correct diet, exercises and taking medication every time and having good social space.
• Being a Nan.
• Living in the freedom from HIV secrecy, knowing I am accepted, HIV is not my label because it is not ME! Free to pursue my dreams, faith, and relationships.
• Living well me means I have choice. Choice to love, live and enjoy my body as a HIV positive women, free from stigma and discrimination.
• I think first of all is acceptance. to have no shame and to feel comfortable in your own skin. Feeling good about yourself is good for your self-esteem and self-image. I think if you are living well, you feel joy and happiness. You work on the daily on how we strive to live well. Such as eat well, exercise, take care of your health, sleep, rest and take time to enjoy life. Lastly to have HIV as just part of your life. Have good mental health.

2.What does it look and feel like in your everyday life?

• Means staying out of hospital and that I can work many more hours and have more “me ” time.
• Being happy, with no judgements from people and being able to work full time feels great.
• For me it means one step at a time so keeping my mind and body mentally balanced. I always take my HIV medication as well as complimentary therapies. Attending and keeping up to date with all my medical appointments is vitally necessary for me.
• Having access to optimal health care and expert medical knowledge and advice is a bonus I never anticipated in the early days of diagnosis. I feel lucky to have professional, accessible trusted services.
• With a high standard of medical care and the option of choice about where I can go.
• Living Well looks and feels amazing and I am grateful to all the earlier advocates who paved the way so I can expect services to be delivered respectfully and without negative judgements.

• It is a work in progress. Like anything else in life, we sometimes hit deadlocks in some areas but it’s all about perseverance and persistence and sometimes modifying my approach.
• Living well in my everyday life is just eating right taking my medication and just been happy with who I am. My daughter who’s 3 also lives with HIV, and I try to encourage and support her on her journey with HIV. I try to show her daily that just because we have HIV doesn’t mean HIV has us. Love you for you and don’t listen to others who are negative.
• I have a loving partner, supportive family, and gorgeous grandkids. I’m enjoying my senior years loving nature, my pet birds and most of all being a nanna! Life is a blessing.
• Is doing everything in a healthy well for instance not taking abusive drugs, too much of drinking alcohol. Also being in a good steady relationship.
• Daily walk, going to work, eating well, laughing, and living. One tablet a day.
• Healthy physically, emotionally mentally and spiritually as I go about all my daily activities.
• Knowing that my HIV diagnosis doesn’t define me. I am much more than a virus and can thrive as a positive woman!
• That I feel confident in choices I have made re: treatment and can just get on with my life. I have won life lotto with a great medical team around me. I chose to be open and this has worked for me. I don’t have to stress of who knows or who may find out. Makes life so much easier. I know that isn’t for everyone.

3. What are some of the challenges in living well for Women Living with HIV?

• Society is still largely discriminatory to persons living with HIV. Also, finding meaningful connections with people who are HIV positive, who understand your everyday challenges can be an uphill task.
• Stigma is still a huge thing as soon as u mention the words HIV to anyone they are thrown back and then somewhat judgemental there’s not enough education around HIV and AIDS. When I take my 3-year-old to the hospital I let them know we are HIV positive they then suit up as if she is a disease. This is beyond crazy and upsetting for any person to go through. More education needs to be taught in medical environments and schools etc.
• Lack of research in DV, female health issues such as breast and uterine cancers. Medication doses form smaller women should be considered as is for a child by weight. Women concerned high dose could impact pregnancy. Pharmaceutical companies’ base studies of men. More data in the Australian context related to Australian women. Drop using the words that minimize us as part of the HIV community for example ‘ONLY’ i.e. “women are only 10% of the community” That makes us sound and feel insignificant and invisible or that 3,400 women in this country are not valuable or of worthiness to mention. Family orientated events where children will feel welcomed at a park BBQ or something like that not hotels for example on a school night! More about the families connected to women living with HIV support for teens dealing with knowing mum has HIV or helping families find ways to disclose. More transparency = less stigma. Taking U=U to another level in Australian visibility. Celebrating women’s choices in life from procreation to breastfeeding. Sharing positive stories of women who chose to make those choices to normalize and help reduce stigma. Go to migrant community leaders and church leaders to educate them on HIV in the Australian context, current information such as U=U and how appropriate language is important.
• Addictions are difficult to quit. It is not easy to get social support when you suffer discrimination.
• Dating, stigma, reproduction, and love.
• Anxieties around HIV stigma especially INTERNALISED stigma and the externalised stigmas in relationships/lack of them, institutional like immigration laws and certain employment restrictions, decision making e.g., childbearing or breastfeeding….
• I meet so many amazing positive women that deny themselves the right to have fulfilling and happy intimate relationships. I hope that this National Day of Women Living with HIV all women can see their value and beauty beyond their sero-status and that we are all deserving of love and pleasure.
• As usual they put themselves last. How open they are depends on family and children. depends on their background as can be cultural issues. Access to information that is specific for women. To have a peer women’s working in all States and Territories.

4.What changes would you like to see for all women living with HIV?

• Keeping HIV awareness on the front burner and not let COVID-19 dominate. The profile of AIDS Awareness Week must remain important and be given a national profile.
• A lot more education about HIV and greater understanding and knowledge in mainstream society. Even in health care and in the media. We need more support services for woman both locally and nationally.
• I believe there is still too much ignorance and there still needs to be better education and greater understanding of how unique HIV can be for us as individuals.
• More HIV awareness education including a national mainstream media chain that puts HIV back on the radar.
• A part time National Woman’s Co-ordinator will ensure the voices of woman are heard.
• Woman’s Sexual and reproductive Health Checks need to include a HIV test with informed consent by the woman.
• Promotion of HIV and STI testing needs to be on the radar of GPs and allied health services.
• All HIV agencies and service providers need to ensure the continued and meaningful engagement of all PLHIV in decision making and processes.
• This will be a priority as Federal Government Funding diminishes in the near future.

• Sensitization and education to the general public regarding the myths around HIV.
• To be accepted and to not be treated as if we are dirty or a drug addict. Not all of us got HIV though drug use, I got HIV from my husband. To not have to be looked at as if we are nothing. I would like to see more education and understanding around HIV and AIDS.
• More opportunities to connect with other women living with HIV. More research into women’s health issues and how they are impacted via medications interactions, Support that extends to connecting other women dealing with other illnesses such as cancers. More research into Domestic Violence and Migration issues women face where HIV diagnosis is used as a weapon against women with these issues in family courts or to control women in a violent relationship. Women we can talk to about sensitive issues in peer support.
• A safe space for disclosure and openness
• Stigma reduced, and widespread community education.
• Less restrictive immigration laws based on merits similar to the UK point system for migrants. Without statistics I seem to notice that women are resorting to partner visas (and being exposed to abusive relationships)
• I would love to see women connect more with each other. We have so many shared experiences and grow and learn so much as a collective. If you have a organisation in your area, reach out and meet some other positive women. We are stronger together.

5.What are your hopes for yourself, and other women?

• I hope for myself and other women to be viewed like everyone else and not be judged or determined by our HIV status. I hope for all positive woman to be our natural selves.
• That we can feel CONNECTED, supported, and can do anything we want!
• To live well and long and to hope that one day HIV is eliminated. That woman are given correct medical information about HIV in 2022.
• That all women receive accurate, sensitive, woman friendly services. That woman will encounter a Stigma free experience around HIV service delivery and engagement with any media.
• I also hope there will be a cure in the near future and HIV treatments will be available for everyone who needs them.
• While HIV was uninvited in my life, I have had to learn to live alongside this virus who rather than view as the enemy I now tolerate its existence and invasion of my body.
• I hope woman hear about U=U and are well referred to services and links and information. I hope newly diagnosed woman will hear the message of hope and that you can have a family and live a well life with HIV.
• To live to their full potential. This means access to the best medical care there is and being accepted when they decide to live openly with HIV.
• My hopes are that all women and children with HIV can just lead a normal life without the worries of been degraded and looked down on. We all deserve the best.
• We feel included and met at where we are as mothers, grandmothers. Career women, homemakers, single, partnered, celebrated, and not living in fear of judgement or rejection or feel unsafe. To feel supported by the HIV community regardless of issues such as Breast Cancer and taken seriously when seeking help relating to how to navigate a serious diagnosis and drug interactions with ARVs and cancer treatment not told it’s got nothing to do with HIV as non-HIV cancer!!!!!!
• Everyone to have confidence and hope in our journey including taking medication and to seek help whenever is possible and avoid depression.
• That a cure will be discovered.
• Freedom to live without the shadow of HIV
• I hope that all women living with HIV can feel safe to have intimate relationships, access sexual and reproductive health services free from stigma and know that we all have the right to feel safe and supported in all relationships.
• They have a Dr, gynaecologist, dentist, peer support they trust and are comfortable with. That HIV is just part of your life and you accept it and feel good about yourself. That women feel comfortable enough that we could get more women to be on Boards and committees to have a voice. This includes my trans sisters.

6. What advice would you share with other women to live well?

• Focus on you. The only person who can make your life fulfilling is you. Make yourself a priority. If this means taking time off work, disconnecting from toxic relationships, eat well exercise and do what makes you happy.
• Just keep being you, there is no shame in what your status is. Make sure you take your medications daily. Make sure you eat healthy and get regular blood work done. And just love yourself and forget the negative. We got this ladies!!!
• Stand stronger together.
• Feel confident in yourself that you are beautiful, and never allow anyone to make you feel less than. You happen to be living with HIV and just as with all people living with HIV you just happened to get a virus, you have no reason to feel any guilt be proud of your strengths and resilience find your inner warrior woman and let her shine! Never feel you need to hide or feel shame. The more you love yourself and accept your diagnosis the less people react badly. I am open and free of fear as I carry myself confidently and people have always been welcoming and treated me as if my HIV is a non-issue. I believe this is due to myself believing my status is a non-issue. So, shine on and be the woman you were always destined to be!
• To avoid oily and junky food as possible and be courageous in their day to day living.
• Seek out peer support, your tears and seeking comfort and community is OK.
• If only they could be connected to other HIV positive women and share lived experience as a first step towards breaking silence in their personal lives.
• Get connected and know that you are strong and sexy!
• To get peer support where you can or is a good fit for you. Such as peer groups, TIM Women. To have others to speak to is important. To know you are not alone and we are here to support each other. Don’t be afraid to ask questions with your Dr. or to question what they are suggesting. You have a voice in the journey for your health.