FAQ

Am I going to die? 

It’s a legitimate concern. After all, images of the AIDS epidemic of the 80’s may be running through your mind like a streaming black and white movie from the past. The answer is no, not anytime soon. Antiretroviral therapy has changed the face of HIV from a near death sentence to now a manageable chronic condition. While no one knows the day they will pass on, thanks to ARV therapy, we can now live near normal life spans.

I don’t know who infected me, what should I do? 

This was a question that rang through my mind time and time again when first diagnosed. I wanted to know because I felt that it would bring me closure. In reality, it does nothing of the sort. If you have the ability to find out, by all means, go for it, but if not, don’t beat yourself up over trying to find the “responsible party”.

The truth is we all have a choice. While contacting past sexual partners from the last 6 months is advised and law in many areas, from a personal perspective knowing who infected you can’t change your HIV status. It will only create negative and toxic feelings and right now that isn’t what you need. You need love and support.

Why me? Is this a punishment for being a “bad” person? 

In life their is no rhyme or reason sometimes why bad things happen to good people. We often equate this feeling with guilt by convincing ourselves we are actually a bad person or being punished when diagnosed. HIV does not care if you are a good or bad person. This is a human condition which no one deserves. Receiving an HIV diagnosis is not a reflection of your inner self but rather a condition that can affect anyone regardless of sexual orientation, race, gender identity, socioeconomic status, or religion/lack their of.

What can I do to make sure I live a longtime? 

Well, for starters maintaining a healthy lifestyle is important. Exercise, a healthy diet, adequate sleep, and keeping up with your mental health are all things that can benefit you. However, doing these things doesn’t necessarily fight off HIV. Antiretrovirals have a very unique way of slowing down progression of the virus therefor adherence to our medication allows us to live long and lives. I find for a combination of healthy habits and medicine adherence has worked well.

When should I start ARV therapy? 

That is a discussion to initiate with your doctor. Most countries now recommend starting ARV therapy as soon as one has a detectable viral load. However, one must be also mentally ready before stating ARV therapy. It’s a lifelong commitment that requires daily adherence and the decision to start treatment must not be taken lightly. Talk to your doctor to determine when starting ARV treatment is right for you.

What is a viral load and CD4 count? 

The viral load refers to the number of copies of the virus in your blood. The more copies in your blood, the quicker the virus progresses and the more likely you are to experience opportunistic infections.

Your CD4 count refers to your CD4 cells also known as T-Helper cells. These are the defense of your body and the prime target that HIV likes to invade. When HIV infiltrates your t-cells it begins to make more and more copies of itself.

As you can see both viral load and CD4 coincide and are an indication of how strong your immune system is at the time. The lower the viral load – the more controlled the virus us, the lower the cd4 count – the weaker your immune system is. Long story short the goal is to aim for low to “undetectable” viral load and a cd4 count above 500.

What does an undetectable viral load mean ? 

It means that there is so little virus in your blood that it is not able to be detected by even the most sensitive of tests. It does NOT mean that you are HIV negative however in a sense it’s as if the virus is dormant in your body. It also eliminates the risk of passing HIV onto your partner. For more information on the benefits of an undetectable viral load, please click here.

How often will I have to get blood work done after starting treatment? 

In most cases doctors will want to see you ever 3 – 6 months however it could be more or less often, depending on your situation. Usually doctors will want to see you more when starting a brand new medication or when blood work indicates that viral load is rising/cd4 count declining.

Their are many medication options, which one do I choose? 

Your doctor will help decide what medication is best suited for you. If he/she hasn’t already, they’ll run a genotype test that will identify your strain of HIV as well as any resistances you may have to various medications. The results of this test will play a major factor in finding what medication will work for you. Continue to strengthen the relationship with your doctor and be honest with him/her about possible side effects you are experiencing. If one medication doesn’t work, there are lots of options out there.

What side effects might I experience? 

Side effects can vary from person to person. Of course on your medicine bottle it will have a long list however keep in mind, everything that has ever happened to someone that is relatively significant must be listed. Keeping a journal that will document your side effects will help when you have follow up appointments with your doctor. Some have little to no side effects while others may experience more severe side effects. Don’t psych yourself out about it, most peoples’ bodies adjust to the medication within days to weeks after commencing. Common side effects can include nausea, diarrhea, and fatigue.

Who would ever want to be with me now? Is finding love while HIV positive possible? 

Yes it is. HIV is simply a part of who you are but it is not all of who you are. You are much more than the virus running through your blood. Everyone has different techniques for how to go about dating with HIV however personally for the following has worked.

 

Giving the person a chance to know you

Disclose before any sex however if the other person is not at risk then wait until the time is right. You’ll know when that time comes..

Educate yourself about every aspect of transmission and prevention and invite them along to a doctor appointment if they have more questions

People react to emotions and much of their reaction is largely based on how it is presented to them. Be confident in your diagnosis and approach it with a “positive” attitude – no pun intended.

I can only date people who are positive now, right ? 

Absolutely not. Many of us, including myself, are in what are referred to as seri-discordant or mixed status relationships, where one is positive and the other negative. Date someone based on your feelings for the person, not a medical condition they are living with. While some may feel more comfortable being in a relationship with someone of the same status, there is no rule that says you can’t. We are all deserving of love.

Can I still have sex ? 

Well this is a pretty big FAQ, it’s sex after all. One of human natures most intimate experiences and well one that brings us pleasure. Yes, you can still have sex. It may take time for you to reach the point of even wanting to have sex again, especially if diagnosed due to condomless sex. When the time is right then yes it is possible. Notify your sexual partner of your status and discuss what prevention options exist to keep you both safe. These can include but are not limited to 1. Condoms 2. TaSP – Treatment as Prevention 3. Pre-Exposure Prophylaxis aka PrEP (A once daily pill taken by the HIV negative partner) 4. Sero-Positioning.

Are my dreams of becoming a father or mother out of the picture? 

No, they are not. If you are aspiring to become a mother or father while positive, several options exist. Speak with your doctor about what is appropriate for you. In today’s day and age due to the effectiveness of HIV treatment, you can have a happy and healthy HIV negative baby, regardless of you or your partners status.

Should I tell anyone of my status? 

That is entirely up to you. Personally I told practically everyone in my life within the first week however I am more of an extrovert. Get comfortable with accepting this new part of your life first and educate yourself as much as possible before making this leap. This may help you prepare for the common questions that will be thrown your way. Before disclosing ask yourself these three questions.

 

Does this person need to know ?

What is my purpose in telling this person my status ?

What are my expectations for their reaction and if they don’t happen, how will I react?

In certain circumstances, such as with sexual partners, you may have a legal obligation to disclose your status. Failing to do so can result in criminal charges therefore it is best to check the laws applicable to you in your state or country in order to know how to best protect yourself in these situations.

When is the cure coming? 

I don’t have an answer for that question. The reality is, no one knows. It could be years from now or decades. What I can say is that  we have made enormous advancements in controlling HIV within the last thirty years and progress is being made every day on the research front. Dedicated researchers, doctors, and scientists are working hard every day to crack the code that will free us from this virus.

When a cure arrives it will be world wide news. You can check out various current HIV/AIDS research updates on my website by clicking here (**Michele, please insert link for research info). While we all want nothing more than for a cure to come, continue to live your life to the fullest. HIV is simply along for the ride.

Where can I find support?

Contact a local AIDS Service Organization in your area to find a support group near you.

(Michele, please insert widget for testing / services locater below)

(Web Address – https://www.aids.gov/locator/)

For myself online support helped tremendously as it was a 24 hour outlet where I could connect with others going through a diagnosis as well. Below are a couple HIV support groups on Facebook that have helped me throughout the years.

 

International Place for People Living with HIV/AIDS and Those That Love Us 

Grupo Internacional Para Personas con VIH/SIDA y las Personas Afectadas (Spanish)

There is so much information online about HIV/AIDS. Where should I start?

Preferably speaking with your doctor about any questions or concerns you are having is ideal. However, I understand you may want know more than can be covered in a 30 minute doctor appointment. Be careful about what sites you visit and where you are getting your information. We are in 2016 and well not everything you read is always true. I found the following sites helpful and would recommend them if you are looking for more information.

www.thebody.com

www.positivelite.com

www.poz.com

http://www.thewellproject.org/

I’m feeling suicidal, what should I do? 

If you are having suicidal tendencies or thoughts then please seek help now. Know that HIV is not the end but simply the beginning of a new chapter in your life. You are loved! Dial the national suicide prevention lifeline 1-800-273-TALK (8225) or find the number for the nearest suicide hotline in your area and dial it. Talking with a trained professional about these feelings can be extremely helpful.

Having a nonjudgmental ear to listen in times like these is key and that’s what will happen when you call a hotline. Also they can help direct you to services that will help you work through these feelings.