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Life Essentials From a Long-term Survivor

I've been living with HIV for nearly 4 decades. I've been on effective treatment for over half of that time. I am so thankful that my viral load has remained undetectable.

Here are 5 pillars that make staying on top of HIV easier and life a lot more livable.

1. My support system

I'm spoiled. I have a supportive partner, friends I can talk to, and family members that have been there since day one. I know it's not that way for everyone and that the stigma of HIV can be a barrier, internally and externally.

That said, having people who are empathetic and non-judgmental about your HIV status is crucial.

If that is not accessible to you in person, please don't let that stop you. If you are reading this online then you have access to a supportive community. You can even protect your status by using a pseudonym. Just bring your real heart to the table because you deserve the kind of support that can really impact your overall health.

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2. Taking medication and keeping appointments

Hey, that's 2! That's cheating. Maybe so. Hear me out! The 2 are linked. It's like a new outfit. One you got on the cheap that makes you feel like a million bucks. Adhering to your medication is the feeling you get in the outfit.

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The doctor’s appointments and the lab work? That's the mirror.

I keep a routine by taking my HIV medication with the first meal of the day. I also keep my biannual appointments with my HIV specialist. Even though my t-cell count has been consistently high and my viral load undetectable, the labs that get drawn at the appointments would be a first sign of any trouble.

If your lab results are inconsistent, it's even more important to keep your appointments.

Even in the days when I first started on HIV medications and my numbers were in need of a boost, I not only kept my appointments, I enjoyed them because my doctor laughs at all my jokes!

Which leads me to the next tip...

This or That

On a bad day, do you prefer to:

3. My healthcare team

I really appreciate my doctors. They listen to my concerns and I feel comfortable enough to talk to them about any concerns. Finding this kind of relationship isn't easy and you're not always going to click with your healthcare team.

Still, it's important to feel seen and heard by your healthcare professional. We all have our bad days, but if you find yourself dreading every appointment then you should consider finding a new doctor. People who are not happy with their healthcare team are more likely to skip appointments and fall out of care. Falling out of care is one of the most dangerous scenarios that people with HIV face.

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4. Check in on yourself

I mentioned that doctors can have bad days above. We all can, of course. I'm not sure about you, but I can recognize someone else's bad day demeanor way before I can recognize my own. I'm getting better at that. I use to just trudge through a bad day without making any adjustments.

Now, if I wake up a bit bleary-headed after a rough night's sleep or notice that I'm carrying some type of stress, I lean into it. At first it was hard. Then I started realizing that, somedays, it's healthier to take a step back. Especially after plodding forward has proven ineffective or disruptive.

I'm not always on top of this one. But I am improving. There will be days that just suck - it's inevitable. A key is to listen when your mind or body is giving you a distress signal. Taking even a quick moment to check in on yourself might just save a day, or be a building block for a better tomorrow.

5. Find your joy

Make room in your life for the things that bring you joy. Our time here is a limited resource. Knowing what makes you happy is the first step, then carving out a little time for that is the harder part.

Recently, for instance, I rejoined a bowling league for the first time in many years. And I'm so glad I did! Recently, when my team lost a nail-biter and I wasn't at my best, I said, "I'd rather be bowling bad than not bowling at all!" Find something that makes you smile, whether you suck at it sometimes or not.

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You are worthy

Wherever you are at with the topics listed above, I hope you’ll improve any of the areas in your life that are lacking. Part of long-term survival is a long term strategy that holds one very simple truth.

Which is: you are worthy of care. You are worthy of love.

And that all starts with you. Wonderful, wonderful you!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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