In this time of stress, anxiety and uncertainty what did being diagnosed with HIV back in 1997 teach me? What skills do I have that I can apply to help me remain a survivor?
I am in no way trying to compare HIV to our current situation or even suggest that the HIV epidemic is the same as COVID 19.
Last night I could not sleep as my mind took over and I began to contemplate all that was happening in the world as the COVID 19 epidemic takes hold of our every thought. I began to question and delve back in time to what worked and what did not to stay positive and the tools I gained to become a survivor of the HIV epidemic when the narrative back then was all doom and gloom. At the time I was diagnosed HIV positive in January 1997 the only possible outcome was death, according to the medical fraternity and everything I knew back then. Yet, somehow I overcame this reality and today at 61 I am still alive, healthy and blessed. How did I manage this? What are the lessons I learned that I can apply to the situation we are all facing right now?
I have no doubt in my mind that this could be considered worse on so many levels compared to HIV. But here is the first ray of light. With HIV due to stigma and discrimination most people dealt with it in isolation, alone, afraid with nobody to talk to. Today we can stand together, we are all in the situation and it will affect us all in a number of ways, be it health-wise, economically or emotionally this is a burden we all have to endure. Even as I type this I have received two bits of news that would be enough to force me into the depth of despair. My one daughter who works as a social worker at a retirement village is classified as an essential service and has to face the danger of going to work throughout the lockdown placing her and her young family at additional risk. My other daughter works in the hospitality industry and has been informed that all staff will be placed on unpaid leave starting from 1 April to 16 April, even if they have over 21 days leave available they will be unpaid for this period. Economically as a small business the impact on me personally too is a reality. Every one of us can share similar stories as we all face this together. With HIV I felt isolated, alone believing I could not share this with anyone. It would have been so easy to just give in and give up but I never did! So allow me to share some of my thoughts on what helped me overcome the despair and in my heart of hearts I trust this might help us all to use these tools as we need them more now than ever before.
Have your own narrative – Focus on positive thoughts.
Focus on every possible action that keeps your mind in a positive state of well-being. When doctors said I would be dead within a few years, all I could focus on was well I am not dead yet. I am alive. I have today. This moment is all I know. What is in front of me now and how can I deal with it positively.
I had to adopt an attitude of I cannot change what is not in my control, but I can focus on what I have control of. I had my mind and at times that was all I had, it was my choice not to focus on the doom and gloom but the opportunities and possibilities. The question must be BUT HOW? How do you do this when all around you the messages are negative and frightening? Here are 10 steps discovered back then and continue to apply in my life:
Step 1: Focus on factual information and weed out anything that is false or unknown. Question everything, read and research what is fact and discard from your mind anything you don’t have evidence to be true. Become knowledgeable as the unknown leaves one vulnerable and at risk.
Step 2: Be gentle, loving, patient and kind with yourself. You are only human and it is easy to be caught up in moments of doubt and anxiety. It’s easy to embrace the negativity and fear based information and false news going around on social media. Admitting you have bought into wrong information and changing your mind is your right. It does not mean you are weak or over-sensitive, you’re just human.
Keep questioning your thinking. Do research and find sources of accurate information.
It was easy for me to listen to all the negative dialogue in South Africa about ARV’s and the then Health Minsters believe that ARV’s were toxic and would kill you. We all know now that was utter rubbish. In this time of COVID 19 the same will happen but be vigilant and seek facts not fiction. Remember you cannot learn everything at once, so be gentle, loving and kind with your thoughts as you give yourself time to adjust to all that is happening.
Step 3: Focus on what you can do and don’t dwell on what is not in your control. Back then ARV’s cost R18 000 a month and were unavailable through the health systems and medical aids and like millions of others had no choice but to do other things that we could do. I could look after my health by focusing on healthy eating, treating opportunistic infections and seeking the services of a support group. What can you do right now to mitigate the impact of COVID 19? Take action to reduce your risk of contracting the virus. Wash your hands, practice social distancing, ensure you have your chronic medication available, eat healthy to keep your immune system healthy, speak to family and loved ones and those with a positive mind-set.
Step 4: Have a WAWA attitude: I had a manager that taught me this approach to problems. I have called him by his nickname not his real name, so that for those who know who he is, please don’t disclose as I don’t have his permission to do that. I was going through a bad time at work and it seemed I would be getting notice from a number of my clients as a result of the previous manager’s lack of competence and service delivery and although in no way it was my fault, I took it personally. In a chat to WAWA I kept saying what if, and he would reply “and then what’s the worse that can happen”. I tried to explain the worse I could think of and he simply replied “ok if that happens what is the worst that can happen” no matter what I threw at him he just kept saying and so what’s the worse that can happen. Eventually after exhausting all my possible end-of-world scenarios, I was exhausted and had to laugh. He had exhausted my negativity and I was able to see that no matter what this too will pass and tomorrow remains filled with abundance and possibility. So in the same way I could say to HIV I choose to live and I am alive right now so I can say the same to COVID 19 right now I choose to live and I am alive. And then what – What’s the worse that can happen? It’s not in my control so let me return to what is in my control.
Step 5: Remain in a state of gratitude: Focus on what you have to be grateful for. Even if it’s seems to be just a small insignificant thing to be grateful for. Right now as I am typing this my two Scotties are lying snoring in my office oblivious to what I am dealing with. I can say thank you for them and for their ability to unknowingly keeping me in a state of gratitude. Think of family, loved ones, having a home or shelter, or the fact that right now you are well. The more you do find the things to be grateful for the more you will discover things to be grateful about and you will attract gratitude into your heart and mind. So here is a thought, for HIV there remains no cure. I remain grateful that I have treatment for HIV that enables me to live a healthy normal life. With COVID 19 most people do recover. Yes many will die but far more who are infected will get better. The prospects of a vaccine is hence far more possible for COVID 19 as we will have recovered patients with antibodies the scientists and medical researchers will be able to work with to develop a vaccine. Our government has numerous programmes to mitigate the economic burden. We have a leadership determined to take action. I am grateful for this and even while it might not help me directly I am grateful that it might help many others.
Step 6: Use positive affirmations to dispel negative beliefs and thinking. I watch the panic buying and I think the sh1#4&t seems to be hitting the proverbial fan according to the toilet paper hoarders. I walk into the local supermarket and see someone wearing a mask and am tempted to ask if they are infected or are sick! Back when HIV started people gave into these fear messages in the same way and withdrew their life insurances, gave up their jobs and lost all ambition. For me that was simply not a choice, I was not prepared to go sit in the sand and say; oh woe is me I am going to die.
Use affirmations as a tool to re-programme your reality. Affirmations are like seeds planted in the mind, if you keep saying them over and over and begin to use your imagination to feel the emotions of what that reality will feel like, they will germinate and grew. Back in the time of HIV I used affirmation such as the following:
- I am well; my body restores itself to full health.
- All is well in my world
What is your affirmation at this time?
Let me share a story of a friend called Abraham; one morning he awoke to the realisation that he was unable to move his limbs. He was later diagnosed with an immune disease that was attacking his body and organs. His degeneration was so fast he ended up in ICU within just a few days with no body function. Unable to even talk he was kept alive on machines. He could hear what was going on around him but he could not respond at all. It was at an HIV support group that Abraham arrived in a wheelchair to share his story. He was on the road to recovery. What hit me hardest was him telling us that when you have nothing left but you still have your brain you can begin to rebuild your life. He told us how as he heard the doctors saying he would be a vegetable and would never recover. His mind just continued to say, “I will walk again”, “I will heal”, and “I will get better”. Many days when my body was weak and I had nothing left I still had my brain and with that I just kept my belief and re-affirmed through my brain that I will recover. My body restores itself to full health. Sitting in his wheelchair his mind had against all odds achieved in his body what his brain told it to do.
Step 7: Have a purpose for the future. Now is the time to dream and plan the future. What will tomorrow bring, what do I still want to achieve? Make a mind map of your goals and aspirations. Jot them down and refer back to them if you are filled with doubt. Without a purpose you are like drift wood in the ocean tossed about and thrown this way and that as the waves please. Having a purpose keeps you focused and gives you meaning. I recall thinking I want to walk my daughter down the aisle on her wedding day. I dreamt of having a grandchild on my knee. I dreamt of working for myself and being successful at it. I made sure these dreams were possible, tangible and achievable. These goals became my anchor and they kept me focused and able to remain positive through the dark days of despair.
Step 8: Surround yourself with positive friends and loved ones and remove those who bring you down and don’t serve your purpose and aspirations. I found a support network for HIV+ people and they helped me to learn, keep a positive mind set and remain focused.
I stopped watching everything on social network platforms that did not uplift or align to my goals. You can remain informed without buying into every bit of garbage on the internet. Restricting negative messaging, by being selective about the resources and where the information is coming from. By interrogating everything and stepping back from false news you will be able to not let these message influence your thinking. I know bad news sells so I consciously refrained from believing everything as true and hence making it my reality. I trained my mind to clear out what did not serve me while remaining knowledgeable and informed. I listened to my inner ding (gut feelings) about what I needed to know and what had no purpose.
Step 9: What you think and say becomes your reality: Being mindful of your self-talk is a key step to reprogramming your mind and your words as they shape your reality and future. Laughter they say is the best medicine, spending time in nature helps, enjoying your garden, reading something motivational. Guard your thinking, your emotions and your feelings as they shape your future. There is researched evidence that what you think and say is sent out into the universe and returns to you and manifests itself in your life. The brain is more powerful than we can ever know. I heard someone say the world will never be the same ever again after this. Well, that might just be the most positive thing if the change is positive and nature and balance are replaced with all that was before this epidemic occurred. What does your future look like? It’s in your hands and more importantly in your mind you can create it if you wish to. Just because someone else says it so, it does not have to be your reality. The need to buy and hoard toilet paper does not have to be your reality, you can choose to wash your butt rather and you won’t need toilet paper. The use of water in Muslim countries is due in part to Islamic toilet etiquette which encourages washing after all instances of defecation. See no need for toilet paper after all. Define your own reality. Think out of the box and be unique. If you don’t have sanitizer, wash your hands with soap and water.
Step 10: Take action and take control: I have heard a saying that when life gives you lemons make lemonade. Choose to be different. Plan your future. Look after yourself and those that you care for. Remember we are all in this together.
You don’t have to follow others. If everyone says lets jump off a cliff do you choose to just blindly follow?
Take actions to prevent contracting COVID 19 now for your health which include:
- Wash your hands
- When you cough, put the crease of your elbow against your mouth—and if you see someone coughing in a public space, ask them to do it, too. Don't cough over your hands, because your hands end up touching things. That’s general practice—that’s not just for avoiding COVID-19.
- In addition, keeping a cool head is the best option. Don’t panic. Don’t freak out on all the things that are being portrayed in the media right now.
- Manage your other health conditions: Stay on your meds, keep your immune system healthy, keep working out.
- Keep exercising at home to stay fit and healthy
- And, one last time: Wash your hands.
And in the words of my eldest daughter “This too shall pass”. My question to you is will you come out the other side renewed and a better person or not? The choice is yours, what are you going to make of this all, it’s in your hands or more accurately in your mind.
Stay safe, stay strong, with love and light.