Every 40 Seconds

Every Forty Seconds
“We need to raise awareness about the other epidemic—depression”
by Joshua Middleton

Article written for and property of A&U:America’s AIDS Magazine : Original Article Link  can be found  by clicking here 


am HIV-positive and, yes, I also live with depression. That’s right, I said it. The big “D” word that no one wants to say. Let me share with you my perspective on an epidemic possibly far bigger than any we have ever faced before.

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Joshua bicycled across the Golden Gate on a recent trip to San Francisco. Photo courtesy J. Middleton

 

On a recent trip, as I bicycled over the Golden Gate Bridge, the reality of what has become such a taboo subject really hit home. The architectural masterpiece that is visited by swarms of tourists a year also sits above a graveyard where thousands have succumbed to the seemingly neverending battle with mental health issues, namely depression.

Just as the marine layer began to lift, I peered over to my right towards another iconic Bay Area piece of history, the infamous Alcatraz Prison. Imagine being imprisoned in such a place. Four walls confining you from freedom with only a glimpse of the outside world. A place that has entrances and exits but, despite knowing how to get out, you can’t seem to accomplish it. Happiness and joy are taken from you and the reality is the vastness of time that is ahead of you. It seems you are just going through the motions. The worst part of it is, no one talks about what you are going through; it’s as if you don’t exist. You are left with a feeling of isolation, cast out from society. Now you know what it is like for someone who lives with depression.

Ironically, both are located in San Francisco, a city that has been majorly affected by the virus since the beginning of the AIDS epidemic. Although some statistics show that sixty percent of individuals who are living with HIV are also living with depression and that we are three times more likely to become depressed, society as a whole doesn’t care to talk about it. It’s uncomfortable, awkward, and foreign to those who haven’t experienced it.

Its effects on someone living with HIV range from the extreme cases of suicide to other issues such a decline in treatment adherence, substance abuse, and an overall reduction to quality of life.

Did you know that suicide is a leading cause of death? In 2014 alone there were over one million deaths a year, which breaks down to one death by suicide approximately every forty seconds. In two-thirds of the cases, depression was an underlying factor at the time they ended their lives. By the time you finish reading this article theoretically five more will be gone because they couldn’t hold on any longer. They were strong for far too long.

That’s right, strong. You didn’t misread and no it wasn’t a typo. Enduring depression takes strength. It’s not a sign of weakness and it’s the very stigma that tells us these things that is keeping many in the shadows of silence. We need a new approach to how we look at this condition. We need to encourage people to speak up and seek help whenever possible.

How can we expect people to adhere to treatment when taking a pill appears as difficult as climbing a mountain? Why would substance abuse not be on the rise when people are feeling so low in their lives that they find a way to get a temporary high and mask their pain? How can we tell people to look at the positives in life when the world seems to be crumbling before them?

Understandably, HIV is a life-changing diagnosis. It’s a virus that has been stigmatized from the very beginning and for various reasons it can trigger depression. Integral care of both physical and mental health from the beginning of diagnosis is vital. There is help out there, but people will only reach out for it when they are ready but are often held back by the stigma.

What can you do to help someone with depression? Listen. Yes, it’s that simple. Realize that a nonjudgmental and impartial ear is crucial. One that isn’t there to offer unwanted opinions or advice but just to offer an open line of communication and give a hug when needed. With this one simple step. you have validated someone’s feelings in knowing that there is no shame in saying, “I have depression and it’s okay to talk about it.”

If we are serious about reaching our goal of zero then we must start by talking about depression!

Change starts with a conversation and recognition of the problem—it starts here!


Are you in search of mental health/substance abuse services? Call SAMHSA National Hotline toll-free at 1 (800) 662-HELP. Are you experiencing a mental health crisis right now or feeling suicidal? Need someone to talk to? Please call toll-free 1 (800) 273-8255.

#MyPozMsg Campaign / Campaña de #MiMsjPositivo

For years now, Kevin from RiseUptoHIV, has continually provided a platform for anyone living with HIV/AIDS to share their story. Wether it be the No Shame Campaign or #MyPozMsg campaign, RiseUpToHIV is touching hearts of tens of thousands across the world. I decided to participate in this campaign because it is my hope that through sharing my story it will inspire that same hope in the hearts of others to come to a realization that HIV is truly what we make of it. Will it define you or will it refine you? To view the entire video please click below. For the hearing impaired please click my YouTube Channel here .

Whats your #MyPozMsg? Share it by emailing Kevin from RiseUpToHIV at kevincaresusa@gmail.com or message him on facebook.

Por años, Kevin de ElevateAlVIH ha continuado dar una plataforma a las personas viviendo con el VIH/SIDA para compartir sus historias. Si es la campaña de #NoVerguenzaEnSerVIHPositivo o #MiMensajePositivo, ElevateAlVIH esta tocando los corazones de miles de personas en el mundo. Yo decidi participar en esta campaña porque yo quiero brindar esparanza a las personas positivas para que se dan cuenta que el VIH no nos hace sino es lo que hacemos con el virus. Te delimitará o te refiniará? Puedes encontrar el video completo en espanol abajo. Para la comunidad sorda y personas con discapacidad auditiva visita mi canal de YouTube aqui para verlo.

Cual es tu #MiMsjPositivo? Compartalo con Kevin via su email en kevincaresusa@gmail.com o mandale un mensaje en el FB.

Bow Ties and Butter Knives: Fighting Stigma Within Our Own Community

Speechless… That was my first reaction when I glanced down at my laptop screen and saw the following comment appear on my Twitter feed.

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It was in response to a photo I had posted in support of The Bow Tie Movement Campaign; a grassroots initiative seeking to raise awareness for heterosexual HIV positive men. The words that first caught my attention were knife and neck. Was this someone reaching out for help or yet another stigmatizing comment from someone looking to put others living with HIV down? Then I looked further and what I found shocked me.

This tweet was published not only by another heterosexual HIV advocate, but also one well-known to the public eye. Dick Donato also known as @EvelDick, a reality TV star that appeared on Big Brother and Couples Therapy, shared his two cents on what he thought of the campaign in a series of tweets.

 

I won’t sugar coat it, his responses upset me. But more than the anger was a feeling of disappointment. As advocates people who follow our lives look up to us. We are being watched constantly and our words have a profound impact, whether we know it or not. I’m a believer in the age-old saying, “If you don’t have anything nice to say, don’t say anything at all”.

If the man isn’t a fan of bow ties. Ok, I get it. But to put down a campaign that’s focus is to eliminate stigma by tweeting out stuff like this, makes me feel like we have taken ten steps back in the progress we’ve made to date.

To begin with, the idea of using a comparison of self harm to wearing a bow tie is just not right. Call me hyper-sensitive or say that I am overreacting but as someone who also advocates for mental health awareness, it’s just not appropriate. There is nothing humorous about it. I’ve written in detail about the mental health crisis we are in as seen in some of my previous blogs here and incidences like this don’t help the situation.

The conversation then began to shift…


I learned early on in advocacy that it’s important to stay focussed on one thing, why I wanted to share my story to begin with. Sure, it’s great to know that what I’m doing truly is accomplishing my mission by helping others. But it doesn’t mean that because I haven’t reached 133,000 people, that indicates what I am doing is worthless. What kind of message is that sending? That numbers are what are important? These are people’s lives we are talking about here.

Wether it’s one or one hundred thousand lives, a blog viewed by a couple hundred a month or a show viewed by millions, we all can play a part in this fight. Let’s not put each other down but rather build each other up. This isn’t a competition and the minute that it becomes one it is time we take a serious step back to analyze the situation.

A key component of being an advocate is being humble. While I commend Dick for the work he has done in HIV advocacy, I believe he dropped the ball on this one. Heterosexual men face an enormous amount of stigma and often stay in the closet due to this stigma. We expect it from the outside world that is uneducated and ignorant to our struggle but not from one of our very own.

If I was just starting into advocacy or thinking about speaking out about my status, this would have deterred me. A heterosexual male is going to look at this and say “Whoah, if that’s the reaction the HIV community, how will others react?”

The whole point of this campaign isn’t about bow ties. It’s about saving people’s lives! I am so thankful for the love and support I have received from fellow advocates, friends, and family. I truly do wish Dick the best and hope that this will serve as a learning experience that we can all grow from.

Advocacy isn’t about reality TV but rather real life. Lets put an end to the drama and focus on ending the trauma induced by the stigma that has followed this virus for decades. Wether you are straight or gay, like to wear bow ties or would never be caught in public wearing one. Let us never lose focus; reaching zero and a HIV/AID’s free generation.

 

 

 

 

5 Valuable Tips to Bridge the Gap with your HIV Healthcare Team

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Left: Laura (RN/MA), Left Middle: Joshua Middleton, Right Middle Dr. David Redfield (MD), Right: Kathy (RN)

Bridging the gap with your healthcare team can seem like a daunting task. After all, they are the experts who spent years of life in school and have all the answers. Right?  It’s natural to sense an us vs them mentality however this is not how the relationship should function. As the old saying goes there is no “I” in team and this is especially true in the world of healthcare.

Each individual member of your healthcare team has a unique role. From you the patient to the doctor, nurses, and medical assistants. Similar to a recipe, one cannot expect the finished product to come as desired if any ingredients are missing or not mixed together properly.

Here are 5 valuable tips I have found helpful in my time living with HIV and it’s my hope they can be useful to you as well. Since we live with HIV we tend to find ourselves at the doctor a tad more than our HIV negative counterparts. By taking these simple steps we can make the most out of our experience and continue to strengthen the physician – patient relationship.

1. Find a doctor that is a good fit for you

This may seem like a no brainer but believe it or not I have many HIV positive friends who stay in care with a doctor with whom they just don’t click. It’s more than just looking at a doctor’s experience in the field of HIV.

Maybe you prefer a male or female doctor? Possibly you would like a doctor who is older or maybe younger? Depending on your sexual orientation you might also choose a doctor that is LGBTQ friendly. Do you prefer someone who is more hands on or someone who is more laid back?

An HIV specialist should be someone that cares about you in the fullest sense and utilizes integral care to focus on both your physical and mental health. They are someone who listens, is punctual, has a good bedside manner, and has your best interest at heart as a person; not simply as another patient on his or her list of daily appointments. Although it may take time to find the physician right for you, when it’s all said and done, it will be well worth it.

2. Build trust and understanding

Any relationship in life requires trust and this  particularly rings true for the connection that doctors and patients build together. Although it can take time to build; it starts with an honest and open conversation with your physician. HIV is often a subject that involves topics sexual in nature and ones that understandably you do not discuss outside of the bedroom. It’s important to know your privacy and confidentiality are protected by HIPPA laws and that your doctor doesn’t need to know this information to pry or make you feel uncomfortable; but rather to provide you the best care possible.

It doesn’t mean you need to give over your black book of hook ups throughout the years or go into vivid detail of every sexual act you have ever engaged in however you should reach the point where you feel comfortable in talking with your doctor about your sexual health.

Take it a step at a time, however after awhile, it’s been my experience that it becomes much like a friendship. You can talk to anything with a good friend because you have that trust built. The same goes for your HIV specialist. They are a non bias third party and if they are not, get a new one.

It’s not just a one way street either where you spill the beans and are left feeling empty. Take some time to get to know your doctor. It doesn’t mean that you need to know their favorite color or who they rooted for in the last Super Bowl but even a quick minute spent together talking can make a big difference. It continues to help bridge that gap and sense of awkwardness that one naturally feels when visiting their physician. Doctors are people to and we often forget that.

3. Ask questions

Have you ever left your doctors office with more questions than answers? Did you have questions in mind you wanted to go over in the appointment but somehow along the way you didn’t get to them? Well, this tip is for you.

It’s vital that you ask questions. It helps me to have a list written down and that way I can go through them one by one with the doctor. I akin it to a job interview that much to people’s surprise, should be more like a conversation rather than a one person monologue. Don’t be embarrassed to ask or fall into a thinking trap but take the leap and let the words flow out. Chances are you aren’t the first person that has ever asked the same thing.

4. Get to know your support staff

The first person you see when you go into your HIV specialist’s office is most likely not the doctor. It may be a medical assistant, nurse, or other healthcare professional who’s duty is to assist the doctor. Since you will be dealing with them on a regular basis whether it be setting an appointment, requesting lab work results, or relaying messages to your doctor; take a moment to build a relationship with them as well. There is a lot of behind the scene work done by them that you don’t necessarily see but building connections with them is important if you want to get the most of the relationship with your healthcare team.

5. Become your own patient advocate


We have to become patient advocates because we are in control of our own health, not our doctor. This starts with educating ourselves about what we are up against. It doesn’t take a biology major or rocket scientist to understand the basics. Your doctor can help educate you and if you do your own research as well, then you are setting yourself up for success. www.thebody.com has some great resources and even a Q&A section that can help you learn more about HIV.

Advocating for yourself doesn’t  necessarily mean taking an aggressive approach but rather an assertive one. I learned this practice myself a couple years ago due to my personal experience with the debilitating side effects of a certain HIV medication. Although it worked great numbers wise, I could no longer take the negative impact on my quality of life. I demanded a change from my doctor and assured him after over a year of trying to let my body adjust, it was now time to try something new.

Engaging with your doctor and using effective communication to address your concerns is going to help you both in the short and long run. We don’t just let doctors treat us. We have to teach them how we want to be treated.

 

Undetectable = Uninfectious Campaign Video

When I was diagnosed with HIV at only 22 years of age, I was at a crossroads in my life. From the very get-go, I engaged in taking a proactive stance against the virus and started on antiretroviral therapy, achieving an undetectable viral load shortly after. As someone who is in a mixed-status relationship where treatment as prevention (TaSP) is our chosen form of protection, I felt it was important to participate in the Undetectable = Uninfectious project (U=U) of the new Prevention Access Campaign.

Through my work as an HIV advocate, my influence as a social media blogger and my passion to help others, I feel it’s my duty to get the correct information to the masses. We are living in a time where other safe sex strategies exist for HIV prevention.

TaSP is revolutionizing the HIV prevention arena as we know it. Instead of fighting it because of fear, we need to take the opinion out of the conversation and accept what science has and continues to prove time and time again: Undetectable truly does equal uninfectious, and that’s why I’m part of the U=U campaign!

*** TheBody.Com Article ***

Bon Voyage: A Recap on the 2016 Poz Cruise & Adventure Bear Alaskan Rendezvous

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The vastness and beauty of nature is something that has mystified mankind from the beginning of time. It’s as if by seeing the wonders of the world, we see the beauty inside ourselves. Most recently, I experienced this feeling as the annual HIV Poz Cruise joined forces with the Adventure Bears, a social group of gay and bear friendly men. Together we explored the last frontier, the great state of Alaska. Although not the typical cruising location that you might have pictured in your mind, it was the trip of a lifetime and for me, a time to rejuvenate.

While we might not have necessarily shared the same HIV status nor sexuality in all cases, we did have a blast, and found comfort in our supportive allies.

Together we laughed and bonded while creating and strengthening unforgettable life long friendships. It all started in the rainy city of Seattle, Washington which was the point of departure, the beginning of an adventure that was thoroughly enjoyed by all.

As the horn sounded and the ship set sail the excitement could be felt throughout the Ruby Princess. It was however without one face that those of us who have been on the Poz Cruise begin to enjoy more and more ever year, our travel agent Paul Stalbaum from Cruise Designs Travel. Although unable to attend this year he put us in good hands as Laz from the Adventure Bears led our group and kept everything organized throughout our journey.

On board we enjoyed private cocktail parties, fun games of trivia, gourmet dinners, and dance parties to shake off all the calories we were gaining from the delicious food onboard. Princess Cruises also had tons of activities to keep us more than occupied. These included whimsical musicals, magic shows by world renowned magician’s, and singers with vocals that pleasantly entertained the group.

As we stopped at the various locations through Alaska it was evident that there is so much more of this beautiful country that remains to be seen. Wether it be ATV’ing through rainy and mountainous territory in Ketchikan Alaska, dog sledding with Iditarod past and future champions in Juneau, ocean rafting the beautiful fjord of Skagway, or a serene whale watching tour along the coast of Victoria B.C. Canada, there was something for everyone.

Some even opted to take tours of the majestical glaciers that are well known throughout Alaska and take a train ride through the lush rainforest of North America that yielded it’s beauty in a stunning display of greenery and wildlife.

formalIt’s a cruise that I look forward to every year because as someone who spends much of my time doing HIV advocacy, everyone needs a break from time to time. It’s important to take a step back, a deep breath, and recharge so I can come back even more energized than when I left. To have the opportunity to connect with others within the HIV as well as the LGBT community who as we know has been disproportionately affected by this virus, is an amazing experience. Sometimes the best medicine in life is the joy we share in interacting with one another.

For future cruise information please visit www.hivcruise.com for itinerary and rates. In October we travel the Eastern Caribbean which will include Grand Turk, La Romana (Dominican Republic), Aruba, and Curacao. Looking forward to 2017 we join the Adventure Bears once again and travel the Mediterranean Sea.

I hope to see you aboard sometime, you won’t regret it

** Disclaimer: No assumption of one’s HIV status can be made by someone simply attending one of these cruises. **

Suffering in Silence: Why the HIV Community Can No Longer Ignore Mental Health

The reality is that the HIV community is in the middle of a mental health crisis, the stakes could never be higher and our lives are on the line. We are focusing on the exterior rather than the interior and quantity over quality. Our tunnel vision has blinded us to the serious situation in which we find ourselves.

Dr. David Fawcett, Ph.D., L.SC.W., who is a contributor to TheBody.com and TheBodyPRO.com and author of Lust, Men and Meth: A Gay Man’s Guide to Sex and Recovery, has provided professional insight into this issue:

“Those of us living with HIV/AIDS must be vigilant about mental health. In any given 12-month period, more than one quarter of us will meet criteria for anxiety disorder, and over half will have a serious depressive episode. This can affect medication adherence and it impacts our psychological and physical health.”

We live in a society that doesn’t fully understand mental health, one that tells us to think positive and snap out of it. Meanwhile, in many cases doctors are overprescribing medication because we live in a day and age when happiness comes in the form of a pill.

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Even when someone seeks help, navigating the complex mental health system is difficult. Most insurances don’t cover mental health and, when they do, patients are often stuck with below average physicians.

When I was diagnosed HIV positive in 2012, I experienced the broken mental health care system first hand. Even with a very good private insurance plan, I found myself sitting in a county clinic where it seemed that my mental health was simply a box to be checked off on my health care team’s to do list. This was followed by a local AIDS Service Organization (ASO) that was more interested in signing me up for services I did not need than in providing me with information on mental health or support groups.

Although the odds already stacked against people living with HIV, the community is turning a blind eye. The National HIV/AIDS Strategy barely scratches the surface when it comes to mental health and, when it does, it offers — at best — vague solutions.

Many ASOs that are strapped for cash face difficult decisions about how best to distribute funds. Professional mental health is not always at the top of the priority list and free support groups soon become the solution. Support groups are helpful and often vital; however, people often have deeply rooted mental health issues requiring professional help.

In my opinion, this approach is creating a formula for people to fail. Many are suffering in silence, which has serious consequences. This disconnect can contribute to substance abuse, decline in adherence and increased infections.

For years, the focus has been on treatment adherence instead of analyzing all parts of people’s health. As seen in a study from 2011, if someone isn’t mentally ready, adherence rates decline. I feel that if we do not address mental health in a much greater capacity, the rates of mental illness are going to continue to climb and the challenge of treatment adherence will become all the more difficult.

Moreover, those who live with mental illness are far more likely to become HIV positive than the regular population. If the HIV community makes mental health a priority, we will not only help those living with the virus, but also prevent more infections.

As a society, we can put pressure on insurance companies to increase coverage for patients and reimbursements to doctors. Physicians need better education about the subject because treating mental health problems is much more complex than is taught to those who do not specialize in the field.

It’s evident that we have our work cut out for us; however, change has to start somewhere. The elephant in the room can no longer be hidden, and while society as a whole needs to revaluate its solution to the mental health epidemic, the HIV community and we, ourselves, need to play a part in the process.

David Fawcett has some advice about what we can do as patients to improve the quality of our lives on a micro-scale level:

“There are many mental health tools we can use besides medication for symptoms. These include self-care like good nutrition and adequate sleep, along with meditation, conscious breathing and, most of all, staying as socially connected as we can to our support systems.”

mental healthAs for the HIV community as a whole, change begins with integrated care starting from the initial HIV diagnosis. The first hours, days, weeks and months after diagnosis are crucial for someone living with HIV. The focus for ASOs should not be on the number of members but rather on the quality of care being provided. We are more than a dollar sign; we are human beings in need of help. We need to make mental health a priority for the National HIV/AIDS strategy in order to ensure that resources are made available to make these changes possible.

Above all, we need to raise awareness to break down stigma to show the world that there is nothing wrong with saying, “I live with a mental health disorder and I need help.” Our mind is a powerful tool unlike any other on earth. Let’s make sure we are doing everything to keep it in tip-top shape. If you are struggling with mental illness, please know that you are not alone; I, myself, live with depression. Feel free to share your story in the comments below or via email. You can also join the discussion on mental health on TheBody.com forums. Together we can get through this!