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Living lively with HIV/Aids; an interview with Alex Sparrowhawk

Updated on January 18, 2014
Tom Mukasa profile image

Tom Mukasa is the pen name of Thomas Rogers Muyunga Mukasa who hails from one of the smallest countries in Africa. He lives in USA. Enjoy!!!

Meet Alex Sparrowhawk saying it all, saying it better! Living "LIVELY" with HIV.

Alex is a friend of mine from United Kingdom, he is 28 years and was diagnosed with HIV in 2004. I am a medical doctor from Uganda in my mid-thirties. I have worked around HIV persons since 1997 as a young man who had joined Rotary International as a Rotaractor and Lions Club as a cub.

That started my journey in prevention medicine and science. Today I want to say I am a Prevention Chain Outcome Practitioner. I empower persons who come to me for conversation on prevention with building subject matter on life preserving activities. My schedule has since been a very busy one.

Uganda

This interview is between Alex Sparrowhawk of UK and Dr. Thomas who now lives in USA.
This interview is between Alex Sparrowhawk of UK and Dr. Thomas who now lives in USA. | Source

What were your fears on day one when told you were HIV positive?

AS: I didn’t really take it in to begin with, I just felt very numb and silent. The fears probably grew over the next couple of days as the news sank in, I was worried about what people would think of me, who could I talk to, how long would I stay healthy for and would I get ill. I soon learnt that HIV is now a manageable condition with medication but I would be lying if I said I didn’t still have some fears about the virus. I think now I worry more about my long-term future, growing older and what care I will be entitled to if I am able to retire later in life. The NHS in the UK is already under a lot of strain with an aging population, I worry there will be big changes to the current, free healthcare that I am so lucky to receive at the moment.

Living With HIV

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What were the first five decisions you made to live longer?

I have never been asked this question before!

I think the first and most important decision I made was to carry on living my life as I had intended to.

I wasn’t going to allow this virus to get in the way of my plans.

Soon after diagnosis I also made an important decision to start medication, my cd4 was 218 when I was diagnosed before decreasing to 213, from the information the doctors had given me I knew I would be facing serious health problems if I didn’t – and that wasn’t an option for me. I’m finding it hard to think of five decisions, but the third and final one I’ll mention was my decision to disclose to my best friends at the time. Their support has been vital in my journey with HIV, they have been there during the ups and downs, and I couldn’t have managed to have remained so ‘positive’ without them!

The Story of the Butterfly!

That life, especially our life is in phases and we should like the butterfly who from a chrysalis, caterpillar, becomes a fly-butterfly be ready to adjust!
That life, especially our life is in phases and we should like the butterfly who from a chrysalis, caterpillar, becomes a fly-butterfly be ready to adjust! | Source

Facts! Health Information and Medical Advice!

1. HIV/Aids is no longer a death sentence.

2. Parents, teachers, spiritual counselors, community care givers and peers should be supportive and not the cause of stress for they are the ones who help keep the prevention chain stronger.

3. There are medications that enable one to live longer with HIV.

4. Persons living with HIV can continue contributing to their own and the life of others.

5. Yes, it is possible for people living with HIV to have children without HIV. Visit a provider to know more!

You have mentioned being on medication, do you have any adherence advice?

I take a combination which is made up of three different pills I need to take on a daily basis. I usually take them at 10pm each evening as it was a time that suited me in the beginning and to be honest has now largely become a habit and as routine as brushing my teeth before bed. I would advise people to do the same, fit taking medication into a routine so it’s easy to remember, I also set an alarm on my mobile phone which acts as a reminder just in case I do forget.

Do you have any safe sex negotiation tips?

I think you have to be strong and confident.

If you want safe sex then demand it, it isn’t something you should be sorry about.

If someone has indicated they don’t want to use protection and you do then don’t sleep with them!

Respect is important in any relationship and if someone isn’t willing to honour your own personal feelings then maybe consider if it is worth having a relationship, whether casual or long term, with them. Of course ‘safe sex’ doesn’t necessarily mean using protection either. It isn’t going to excite everyone but some people are happy with sexual relationships that don’t involve penetration where there is no risk of transmission. The best thing you can do is educate yourself and make your own informed choice.

Any words of advice to sexually active adolescents living with HIV?

As I’ve just said, educate yourself, make your own decisions but respect other peoples as well.

I think it is still very important that young people living with the virus enjoy sex just as much as their peers.

Sex isn’t something to be ashamed of; it’s natural, instinctual and part of everyday life.

How do you find working and living with HIV in UK?

I still work for the same company I did when I was diagnosed, and I’ve been promoted a couple of times as well!

I’ve not let this virus stop my career ambitions, if anything it has made me more determined to progress and do something that I can get passionate about and stick my teeth into. I’m lucky that I work for a great company that supports diversity: we have an lgbt support network that I am a member of and the business is also really understanding about routine hospital appointments or check-ups.

When I came out about my HIV status all my colleagues and work friends were amazing and supportive, they’ve never treated me any different to how they did previously. I’m very much aware that I am lucky to be in this position as not everyone is so lucky; many people suffer prejudice at work due to outdated stereotypes and misconceptions about the virus. Stigma is still the biggest issue people living with HIV have to deal with in my opinion.

With regards to the global outlook, what do you believe are the fears out there and your tips with dealing with them?

I think I hit the nail on the head when I mentioned stigma just now. People are growing more confident about medication, and its availability.

What you can’t be confident with is people’s attitudes and whether we can change them; there is no pill out there to remove fear and ignorance.

You have to remain strong, have a good support network, family and friends who can be there for you and who don’t treat you different because you have HIV. I wouldn’t be as confident without the support of other people living with HIV, their advice and stories are a great comfort, especially to newly diagnosed people.

Do you have a word for the pharmaceutical and insurance companies?

I fully respect that businesses want to make a profit, if they didn’t they wouldn’t be able to run efficiently or pay their staff etc.but I think the pharma and health insurance industries need to update their mind-set and bring it in line to where HIV is today.

Medication needs to be affordable for those who need to pay it and insurance should be readily available to those with HIV, today it is manageable and people are living normal lives with the virus. It’s great there are more specialists in the market now than ever before, but for how much longer should we put up with ‘special treatment’, people living with HIV deserve the same respect as any other customers.

Where are your support spaces and networks?

My biggest support comes from my boyfriend, we’ve been together for almost four years and he is HIV negative.

He is 100% behind me in everything that I do and he always lets me be myself. My friends and family are always there for me as well. I’m also a member of a very special online community, the myHIV forums run by UK charity Terrance Higgins Trust.

I found the fora about a year after diagnosis and they’ve been a great place to talk to other people living with HIV in the UK. There is always someone who has been in the same situation as you, or has been through a similar experience. And I can’t really talk about networks without mentioning Twitter, a fantastic resource to promote HIV awareness, meet other people living with the virus, and all with the added bonus of a global audience.

Finally, is there any question you would like to ask!?

I think with the time of year it would be appropriate to ask what your goals and ambitions are for the next 12 months and what progress you are hoping for regarding HIV in 2014?

Dr. Thomas: I do thank you for voicing your experiences. This will help in generating narrative that can in turn inform many others. It will now be possible to say it is "possible" to live with HIV and still be lively.

My plans include meeting with many persons living with HIV and interview them like I have done with you. I want to ask them to allow me, like you kindly offered, reproduce the interviews in a format that will be read by many others.

I also want to visit you one day in UK as well as many of the people I shall interview. I want to get interviews, like this, from all the countries of the world.

Life is an opportunity!

In this picture, one sees a lorry carrying goods and people. It was taken in the Sahara Desert. These people look at the desert as an opportunity. It has never got in their way of life.
In this picture, one sees a lorry carrying goods and people. It was taken in the Sahara Desert. These people look at the desert as an opportunity. It has never got in their way of life. | Source

REMEMBER!

HIV/Aids is not a death sentence.

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    • DDE profile image

      Devika Primić 3 years ago from Dubrovnik, Croatia

      An interesting interview and lots to learn about someone with the virus.