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A myHIVteam Member asked a question 💭
Geneva, IL

Sometimes, we can experience a feeling of loneliness when we are not heard. Do you feel left out of the conversation?

September 7, 2023
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Answer Summary

Members opened up about feeling unheard and misunderstood in the context of living with HIV and AIDS, with many sharing that loved ones often... Read more

Members opened up about feeling unheard and misunderstood in the context of living with HIV and AIDS, with many sharing that loved ones often reduce them to their diagnosis rather than seeing their full identity, strength, and goals. Several members described the emotional weight of family members who either overlook their illness entirely or become overly focused on it, leaving little room for the person to be seen as they truly are. A recurring theme was the importance of protecting your energy, keeping a small and trusted circle, leaning on faith, and fighting for your own dignity and voice one day at a time.

A myHIVteam Member

Continue to be brave my friends. HIV is only a small part of our lives.

I am a Long Term Survivor of near 40 years. I am almost 70 years old. The secret to my survival is Focus on my health and wellbeing, and directing my focus on my goals in my life. Ensuring myself that I have a purpose and a reason for still being here. Surrounding myself with Positive people and things that help me to grow and achieve my goals.

Try this and see how your journey goes. What have you got to lose. Be Blessed, Bruce

September 7, 2023
A myHIVteam Member

Funny you should say this @A myHIVteam Member. We just did a routine visit with my partner's audiologist.

His hearing aids are coming up on 5 years. The new ones have AI chips, and probably run $5000. That said, hearing aids are soon to be OTC, and probably much less expensive.

My partner not only struggles with his hearing, but his voice is more of a harsh whisper from vocal cords damaged by an opera career.

There is a joke that most of the conversations between partners amount to each of you saying, "WHAT?" from adjoining rooms. 🤠

PS: Once a week I go to a Zoom group so that I can be heard (and practice my listening skills). 🤠

September 7, 2023 (edited)
A myHIVteam Member

I asked this because lately I've been feeling left out of the picture. Whether it be family or my partner I think people misunderstand what it is to live with HIV and or Aids. I think they become your caretaker instead of your lover and your family worry all the time. They forget that you're still alive and that you have an opinion and a goal and a desire and a means to an end. And sometimes this HIV diagnosis blinds everyone to who you really are and just label you as a person with hiv. I fight hard for my dignity and my voice and will continue to do so.

September 7, 2023
A myHIVteam Member

When that happens I choose just to observe and not speak until spoken to. Our time is more valuable than their conversation.

September 7, 2023
A myHIVteam Member

In my case, it's the family and friends not being concerned that I have AIDS. Because I'm always helping them, laughing, joking or even with a smile on my face, it seems no one ever asks "how are you feeling today? How am I doing medically?" So that's my not being heard conundrum.

September 7, 2023

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