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diagnosed with hiv: managing treatment, access to care and your mental health

finding the right care following a hiv diagnosis isn't always easy, but the challenges can be lessened if you know where to turn.

by angelica bottaro

apr 19 2024
read time 7 minute read
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meeting with the right healthcare professionals is vital for those who are hiv positive. getty images
hiv is no longer a death sentence, and the current therapies available are viable enough to lessen the viral load to the point where it’s undetectable in the body. because of that, people living with and managing hiv can live healthy and happy lives.
that said, when you first become diagnosed, it can be challenging to see the light at the end of the tunnel, especially when the information surrounding hiv and its prognosis is often stuck in the 80s.

myles sexton , who is a cityline style expert, well-known in the fashion industry, and a hiv/aids and sobriety activist, was diagnosed in 2018. since then, they have been using their status and voice to help others with hiv find their way following diagnosis.

at first, though, it wasn’t easy for sexton. they, too, thought that hiv was still a life-threatening illness.
“when i was diagnosed, i thought i was going to die,” they said. “and then i had to learn that, no, i can take a pill or get an injection and live a very normal life.”
while treatments are much more manageable these days and have much better effects, having a chronic illness of any type is challenging to navigate on your own, especially if you don’t know where to start.
“there’s a lot of uncertainty that i think comes out when you do get diagnosed, and depending on where you access service, that journey can be very different,” sexton said.

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individuals living with hiv not only deal with the complexities of managing their health but also shoulder an unequal burden that includes issues like poverty, depression, mental health struggles and substance use.
according to the latest numbers, in 2020, canada saw around 1,520 new hiv infections.

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here’s how you can manage a hiv diagnosis.

focus on informing yourself about hiv

the first thing people should do when diagnosed with hiv is to educate themselves on everything there is to know about it. the common knowledge surrounding hiv is often skewed and outdated, largely due to stigma. because of that, it’s essential that people focus on finding resources and other viable information they can use to learn about hiv, what it entails, the treatment process, and living life while hiv positive.
“i feel like the biggest piece after they get diagnosed is to just try to learn as much as you can about what the future of hiv is,” sexton said. “there’s so much more information available and accessible now to educate yourself on it.”
when sexton was diagnosed not even a decade ago, learning about hiv wasn’t as easy. “when i got diagnosed, there wasn’t a lot of information, or the information was very medical and wasn’t super approachable,” they said. “it wasn’t in a language that i really thought felt safe to me.”

nowadays, because of heightened awareness and advocacy surrounding hiv, the information that people need access to after getting diagnosed is much more accessible and in language that people outside of the medical field can understand, take in, and feel safe to use. resources such as canfar  provide information, event calendars, research updates, and volunteer opportunities for those living or advocating for those living with hiv.

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anticipate barriers to hiv care

there are several barriers to care that people with hiv have to face. for example, not all people live in areas where there are hiv specialists. this can make seeking and receiving care difficult. to address this issue, it’s important to be ready for these barriers and pivot where necessary.
“unless you live in a city like toronto or vancouver, where you have large populations of people living with hiv, it’s really hard to access service,” sexton said, later continuing, “it took a month for me to even go see a specialist or get an appointment.”
“so, now i have a whole month where i’m completely emotionally unstable, mentally unstable, going through this with no support whatsoever to then go see a specialist and be treated like i’m just a number.”
it can feel frustrating and disheartening to have that type of experience, and for many newly diagnosed with hiv, that’s the case. but that doesn’t mean you should ever give up.
it simply means that you can take that time to further progress your journey toward treatment by arming yourself with information, contacting organizations that can help connect you with the right healthcare providers, and working on your physical and mental health at home through eating healthy, getting enough exercise, and practicing self-care.

find the right hiv care team

getting access to hiv care isn’t always easy, and one of the primary reasons for that is stigma . stigma can come in many forms, whether it’s directed at people from their social circles or community or internalized stigma that comes from within.

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these stigmas continue to exist for a variety of reasons, including misconceptions and misinformation surrounding hiv. still, the end result is the same regardless of the cause: stigma keeps people from seeking hiv testing, disclosing their status, or accessing care in a timely manner.
that’s why it’s vital to find the right care team with the right medical professionals who understand hiv. according to sexton, finding a healthcare provider that specializes in hiv is the best way to go.
“having a doctor that specializes in it (hiv care) that is a safe space and totally changes your experience of dealing with your diagnosis, you know, to feel empowered taking care of your health versus maybe being shamed for it,” they said. “it makes a really big difference.”

according to canada’s source for hiv and hepatitis c information (catie) , you can start with your local hiv organizations. they will direct you to the right healthcare providers so you can seek out safe, judgment-free care that will help you regain control of your health.

sexton says it’s crucial to create a team of medical professionals that can cover all bases when you’re first diagnosed, and that includes physical and mental care.

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“i would definitely say sign up to try to take time to speak with a counsellor or social worker,” they said.

pay special attention to your mental health

people living with hiv are more susceptible to mental health disorders, such as depression and anxiety. according to research , as many as 66 per cent of people living with hiv will also experience a depressive disorder at some point in their lifetimes.

because of that, finding the time to take care of your mental health is just as important as taking care of your physical body.
sexton wants people to ask themselves, “how are you mentally healing from going through hiv?” because it’s “the mental healing that comes after that is often a lot harder.”
according to sexton, you also can’t be afraid to ask for help. “there are a lot of services available for people for free, like therapy or counselling (for people living with hiv),” they said. “but i think our own internalized shame and our own fear of just needing help or actually vocalizing it often holds us back. so, people are not so willing to maybe talk to a therapist or see a social worker or be open about their diagnosis.”
sexton understands how difficult that can be, and it took them a couple of years following their diagnosis to get comfortable talking about it. during that time, they read a lot of self-help books.

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“(i was trying) to teach myself to start having these sort of conversations, of allowing myself to be vulnerable and to heal and sit with my emotions and not numb or avoid how i was feeling,” they said.

explore hiv treatments and coverage options

getting treatment early for hiv is essential. when prescribed medication, though, it may not be covered for you. because of that, it can cost thousands of dollars to access the proper medication, and in today’s economic climate, that’s rarely doable for most people.
“it’s really expensive to be on hiv medication,” said sexton. “the pills alone were over $4000 for three months.”
with that high of a price tag, you want to explore your treatment options and the coverages available to you. according to sexton, there is privatized funding available for people with hiv to afford medication.
“if you don’t have coverage, you have to pay that out of pocket,” they said. “there’s a lot of pharmacists and doctors that don’t know there is privatized funding to help get coverage for it.”

the arv drug program , provided by the government of canada and available in british columbia, saskatchewan, alberta, and manitoba, works to help fully cover hiv drugs for those who need them, regardless of their age or income.

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in other provinces, such as ontario and quebec, the program still exists, but it can be harder to get hiv drugs covered under this program because specific criteria must be met before coverage can be given.
the eastern provinces also have some hurdles to jump through to get hiv medication covered, so explore the options in your province so you get the best possible coverage and avoid paying thousands of dollars out-of-pocket.
being diagnosed with and living with hiv is difficult in many ways, but because of medical advancements, it is highly manageable, and most, if not all, people with the infection have the potential to live a long, healthy and happy life with hiv if they take medication and engage in healthy lifestyle practices.

if you or someone you love was recently diagnosed with hiv and don’t know where to turn, you can contact your local hiv organization or contact canfar to learn more about finding the proper care in canada.

angelica bottaro
angelica bottaro

angelica bottaro is the lead editor at healthing.ca, and has been content writing for over a decade, specializing in all things health. her goal as a health journalist is to bring awareness and information to people that they can use as an additional tool toward their own optimal health.

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