Road Maps

What's the road map?

I have a bunch of useless random facts in my head. Sometimes they live there to amuse me, sometimes they connect dots for me at odd times. Have you ever heard of an isochrone map? An isochrone map is a type of map that shows the areas that can be reached within a certain amount of time. Slightly different is a flow map: these usually show movement or migration from one place to another. Time and direction.

Life doesn't come with a road map or playbook and folks tend to think it would be better if it did. I can agree - to a point. We have them in some forms already. Think the "For Dummies" book series (Math for Dummies or Dating for Dummies), or all the self-help videos and tapes or seminars. At one point I really thought I wanted a road map for this life with HIV. Like, really, really wanted a road map. I wanted more than just "you're not going to die." I wanted someone to show me how to navigate life with HIV in ways that made sense to me and my life. It was crazy frustrating to have someone say "it gets easier" without the HOW part of that happening. It did not help much that in the beginning I was surrounded by men with a totally foreign lifestyle than mine and the one woman I was introduced to was 20 years older than me, white, had been married throughout her entire diagnosis and the only thing we had in common was XX chromosomes. Talk about divergent journeys! Even as I couldn't relate, I could appreciate that she was willing to try to help me.

I'm not alone. I hear the same questions in support groups, and online queries and in conversations with peers: What are the medications' side effects? Do I have to tell my job? How am I going to tell my family? What will my friends say? Is anybody going to want me? Am I going to die? How am I supposed to live with HIV?

What I've learned is, as much as it feels like we want a turn-by-turn map of how to navigate this life, there shouldn't be one. Not cannot be one, not couldn't – shouldn't. While I stand behind and fully believe in supporting each other and lifting each other before we fall, no one should have life with HIV handed to them in a pat manner that isn't a personal journey. Otherwise, how do we gain wisdom? How do we learn to course correct and grow from challenges and mistakes? If you are walking someone else's footpath, whose life would you be living? Would you be thriving in confidence or surviving in complacency?

We all deserve to have a village to support us. We all deserve to get accurate, informative information. There absolutely should be examples for us to live by so we don't have to learn everything the hard way. Listen- water is always gonna be wet, so why keep turning down dead-end streets trying to learn something? Take the good advice when you can get it! For all of that though, someone else's journey is not yours. You have to follow your own flow when it comes to getting comfortable with HIV. Just because Debbie Diagnosis went public with her status as soon as she found out doesn't mean you ever have to if it's not right for your life. While Healed Holly has found that meditation and sunflowers bring her back to center when faced with stigma, that doesn't mean cussin' and fussin' isn't healing for you. (I regularly cuss and fuss!) Most of all there is no time limit! When people say you should be 'over' something or you should be 'past it already,' know it's because they are not you and have never experienced what you are in a way they can identify with. Living with HIV is as much a passage through a grief process and process of change as it is a medical diagnosis. There is grief for what was and for what may be. You cannot expect to be who you were and who you are going to be at the same time. Take your time.

Several maps.I say all that to say there is no wrong way to do this. Some of us got here through an unexpected circumstance, some through trauma, and we as individuals have to learn and grow from that. While I wish a smoother path for you, even self-destructive behavior can be a part of getting to know yourself within a life with HIV. I just pray that phase passes quickly without leaving permanent damage. Arriving somewhere on your own doesn't mean you did it alone. It just means you took the trip.

Be well. You matter.




Greatly said!!!

JustineDD's picture

I truly believe in creating the life you want on the path you want. No two situations are exactly the same.


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Valeriel's picture

Greatly said! What, if anything, can we do? Feel like I am not included as all geared towards gay men. Lonely live like a hermit now crushed my femur in hip moving now 66 infected mid 80s so long time survivor.
Now my mental health spiraling downhill and think headed toward nervous breakdown. Severe grief of loss of my legal esa animal German Shepherd my only family member taken by Animal Control on lies. He was opposite of aggressive just protective of me. That happened 3 months after I had hard fall in unlevel chopped up parking lot moving in. Never move into a senior HUD LITC apt bldg. It is horrible here. I have always lived in a house upper middle class. Homelessness not an option for me because stats show very bad for aids person to live like that. Rats as big as cats in tent city and needles syringes littered all over. If I ever became homeless I would kill myself first. I already have a plan on how to do it.



Red40something's picture

It definitely sounds like you are going through a lot at this time! It also sounds like you are a survivor!

Have you reached out to any local HIV service organizations to see if they can help? What area are you in? Perhaps I can help you find some resources if you aren't sure where to go. As a nurse I also feel like I need to say that there are specific things in place to help you deal with thoughts of suicide. You can text HOME to 741741 and also the 988 number from any phone

Thank you for reaching out, I know that can be hard to do. You matter.



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