Let's keep it simple here. If you've had neuropathy for some time, you'll already know what we're dealing with but if you're just beginning to encounter strange sensations in your feet or hands, or numbness which makes it feel like you've got wet sand in your socks when you walk, you may be wondering what on earth's happening to you. You may also be concerned that it's something that may happen to you in the future, or maybe already know a family member or friend with neuropathy and want to understand what's involved to be more supportive. 

Basically, neuropathy is nerve damage. You can equate it to an electrical short circuit, which causes a breakdown of normal service in the nervous system. It's a highly complex condition with many causes and equally many variations and although the symptoms are like no other disease, it can be very difficult to diagnose. Once diagnosed, a prognosis is almost impossible because its progress is dependent on your personal situation. It's another auto-immune disease, where in this case, the immune system more or less attacks the nervous system.

Our nervous system is made up of two parts: the central nervous system and the peripheral nervous system. The central nervous system comprises the brain and the spinal cord and the peripheral nervous system concerns the nerves which spread out from the central nervous system. Confused already? Hopefully not yet.

In general there are two types of neuropathy. If we're talking about damage to a single nerve, then we would call it mono-neuropathy; if several or more nerves are damaged then it is called poly-neuropathy. The peripheral nerves (extensions growing out of a nerve cell or neuron) are also called neurites and they can be compared to electricity cables because neurites also have an external insulating material called myelin. Myelin protects the neurites against both physical damage and electrical impulse damage to the tissue. Neuropathy occurs if the nerve cells or myelin are damaged or destroyed. That's why you can compare it to a domestic short circuit, which makes it easier to visualize.

Most people have one or another form of peripheral neuropathy: nerve damage in the longest nerve channels, furthest away from the brain and spinal cord. This is characterized by the well-known symptoms found in the extremities (the hands, arms, legs and feet) but can also be seen in the internal organs. The symptoms can vary, with amongst others, tingling or loss of feeling; a burning feeling (especially on the feet and hands); itching, chronic pain, or combinations of some or all of them.

Unfortunately, the potential problems don't end there.

The Nervous System

Neuropathy can also attack the so-called Autonomic Nervous System, a term for the part of the nervous system that works involuntarily -- we have no control over it. This system controls things like heartbeat, blood pressure, digestion, certain muscular and lung functions, liver and kidney operations, sexual activity and so on: to put it simply, things which work in the body without us being consciously aware of them.

If neuropathy begins to affect the autonomous nervous system, then a whole range of activities may cease to function normally. Blood pressure problems, (dizziness on standing upright); drying up of sweat, saliva and tear glands; urine retention (not being able to empty the bladder completely); impotence, constipation, stomach contents retention (not being able to clear the bowels); heart rhythm problems; breathing difficulties and so on.

Most people on the street have never heard of neuropathy and certainly most HIV-positive people are unaware that it's a real possibility in their lives; which is strange considering that is generally accepted that around twenty million Americans (and therefore a proportionate number in other countries in the world) suffer from neuropathy in one form or another. Most of them have neuropathy as a result of diabetes, or chemotherapy treatment, or alcoholism, or physical trauma, (up to a hundred causes in all) but the disease still remains relatively unknown; why?

As you know all publicity costs; and because there is no cure and therefore, no world-beating medication for the drug companies to compete over, there is no new money to be made, so few pharmaceutical companies are going to promote neuropathy as a cause. Instead, they boost their older pain killers, anti-depressants, or epilepsy drugs, which work for some people in suppressing the discomfort -- no cash to lose there. Apart from that, there are very few high-profile role models (Angela Lansbury and Johnny Cash are hardly likely to bring in the big bucks!) and the media doesn't find images of neuropathy patients to compare with the AIDS orphans in Africa.

No Outward Signs

That's another major problem for neuropathy campaigners: neuropathy is a disease which, if you stand still, doesn't usually have any outward signs: no rashes, lumps, or malformed limbs, or swelling, or wasting; you can look the picture of health and yet still be in agony from neuropathy. It can be a major issue convincing people, from doctors to family members and loved ones, that you've really got a problem. Little wonder that the anti-depressants are sometimes more useful for the depression resulting from the disease, than helping the symptoms!

The longer you live with the disease, the more you grow to understand what's happening to you but in the beginning, it's like sifting through mud trying to find answers and solutions. Many doctors will still just shrug their shoulders, sympathize and tell you that you'll just have to learn to live with it; which for a patient already living with HIV, is the most negative and depressing thing they could hear. Why don't doctors realize that?

The problem is that patients living with HIV need doctors who will look at their situation holistically because every side effect, medication, or virus-related problem is linked to another medical area. Luckily, most HIV specialists are fully aware of that and have become "Jacks of all trades" in the medical world. You don't just treat the virus HIV; you treat everything that comes with it and for some people that's like the contents of a small medical dictionary! Neuropathy, in whatever form, is the unexpected sniper that hits you just when you thought everything was settling down in your medical life. It doesn't come with the virus, or when you begin the drug regimes, but appears later, as a result of the medication, the virus itself, or a host of other reasons. It's a mean, life-changing disease that has different causes and is different for everyone and that's precisely what makes it so difficult to treat and why doctors are just as frustrated as we are.

That said; neuropathy doesn't affect everyone with HIV. Current estimates and statistics show that at least a third of HIV-positive people will encounter neuropathic problems but that means that two thirds won't! Still, one in three, or four is pretty significant and the longer people survive with HIV, the more cases of neuropathy (amongst other things) are appearing. Then, if you do have neuropathic symptoms, they may begin with as little as numbness in one toe ... and stay that way; or tingling in the feet and hands, combined with numbness and paradoxically, pain which eventually lead to muscle weakness and some form of permanent disability. It's just that sort of disease; it ranges from mild to wild, with everything in between. The doctors try to treat the symptoms with a variety of drugs and/or supplements and alternative therapies and what works for one person, doesn't work for another with exactly the same symptoms -- are you getting the picture? Unfortunately, however much the many symptoms can be helped or not, the disease itself is, in 2011, still incurable.

Don't Get Depressed!

This article is not meant to depress people but it is meant to be realistic. If you know what you're dealing with, then it's much easier to find a place for it in your life. Moreover, worst-case scenarios are just that: you will probably be able to find something to help your own neuropathy experience become more bearable. It may take a while, as you try this, that or the other treatment but most people will find some relief amongst the many options available. It's very important to learn as much as possible about your condition and if your doctor tells you there is nothing he or she can do, that may be strictly true in terms of curing the problem but that is never an acceptable approach in terms of living with the disease; change doctor and find someone who will support you in your efforts to control the worst aspects of neuropathy -- with a bit of luck, your HIV specialist may be the very person. Armed with facts, you can work with the medical specialists, rather than passively accept a one-sided relationship. However, most first-port-of-call doctors are not neurologists and may have a limited experience of neuropathy. Plus, busy as they are and under the burden of time restrictions, their very human instinct may be to usher you out as quickly as possible, to try to clear the day's backlog of patients. If you can save them some time by doing your own research beforehand and maybe setting your symptoms down on paper, you'll earn respect and establish a constructive treatment program much more quickly.

After all, you're already living with HIV; you deserve some acknowledgement for what you've already gone through but as Sir Francis Bacon said in 1597, "Knowledge is power."

Much more information about Neuropathy and HIV can be found on my website here and my blog here.

Dave also writes for The Body.com here, where this article first appeared

Bio: English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

I'm here as the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a website and blog where practical information, hints, tips and experiences for patients could be gathered together in one place.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

Next week Dave asks “Why Do People With HIV Suffer From Neuropathy?”

This article is based on a report by Greta Bauer, Nick Redman and Kaitlin Bradley for the Trans PULSE team. E-Bulletins, presentations and articles available at www.transpulseproject.ca To contact Trans PULSE: This email address is being protected from spambots. You need JavaScript enabled to view it. or 1-877-547-8573

The Trans Pulse study says about two-thirds of trans guys are gay or bi men who have sex with men, and are attracted to or sexually involved with either trans or non-trans men. Trans guys already exist within gay men’s communities, gay bathhouses, and gay men’s bedrooms. Yet, their sexual health concerns are rarely made visible. No  assumptions can safely be made about how an “average” GB-MSM trans guy may act, what he may do in bed (or not do in bed), or what other psycho-social stressors he may or may not have to deal with.

The report concludes “Sexual health and HIV-related prevention and testing programs and materials need to incorporate trans guys’ issues and needs, and to reflect the potential for gay or queer bodies to be trans bodies.”

Trans guys include those who identify as transgender, transsexual, or have a history of transitioning medically or socially to male, or to another identity such as Two-spirit or genderqueer. A broad definition of “trans” was used in the study; participants were not limited to particular identities, and were not required to have begun or completed a social or medical gender transition. A total of 433 participants were recruited over a 12-month period,

Trans PULSE is a Canadian Institutes of Health Research-funded, community-based, research project to understand and improve the health of trans people in Ontario.

The survey included items on health-related measures, including social determinants of health, psycho-social measures, health care experiences, and sexual health. Participants were trans people age 16 and over who lived, worked, or received health care in Ontario.

The research team gathered data which indicated  diversity in the sexual orientation of trans guys and this data is shown in Table 1 (right) Trans guys identified across a full range of sexual orientation identities, with only about one third identifying as straight. As a group, trans guys had cis (cisgender, or non-trans) partners and trans partners who identified as men, women, and genderqueer.

This diversity clearly challenges assumptions that trans guys transition to be straight men, as even many of those who were currently partnered with a woman did not identify as straight, and there were many who were attracted only to women (sometimes only to cis women) who still identified as queer.

63.3% of trans men fit into the GB-MSM category, the focus of this report, which defined GB-MSM trans guys as those who had a sexual minority identity (e.g. gay, bisexual, pansexual, queer) and were not exclusively attracted to women, or those that had sex with a cis or trans in the past year, regardless of how they identified.

Relationships, Sex, and HIV Risk of GB-MSM trans men

Table 2 (right)  provides details on the relationships, sexual activity, and HIV-related risk for GB-MSM trans guys.

While not every trans guy used all of his body parts for sexual activity, trans guys engaged in all types of activity, including receptive genital sex. These sexual behaviours do not correspond to HIV-related risk, however, as not all involved “flesh genitals”, but may have involved prosthetics, toys, or fingers, for example, and even where flesh genitals were involved, condoms or other barriers may have been used. Proportions engaging in high-risk activities were much lower than those representing any engagement in activities. 

The primary contributor to HIV risk was unprotected receptive genital sex, an activity some may assume trans men are unlikely to engage in. Most HIV-related sexual high risk related to having cisgender male partners, as exposure to ejaculate is required to qualify as high risk. For this reason, overall HIV-related risk among trans guys was entirely borne by the sub-group of trans guys who are GB-MSM. About one-third of GB-MSM trans guys had a cisgender man as a partner in the past year, and 1 in 10 had engaged in high-risk activity; roughly three-quarters engaged in low/moderate risk activities.

While a fair amount of research exists on trans women who engage in sex work, participation by trans men is infrequently acknowledged. Researchers  found that 15.8% of GB-MSM trans guys had engaged in sex work or exchanged sex for money or goods. While proportions engaging in sex work were similar to trans women, it’s not known if trans guys are similar with regard to the frequency of sex work activities, or the length of time spent in the trade.

While it is not clear how or if it relates to HIV risk, results indicate a high proportion of GB-MSM trans guys had never been tested for HIV, while 1 in 5 had been tested in the past year.

Psycho-social Factors that may Impact Sexual Health

Table 3 (right) presents data on several psycho-social factors that may impact sexual risk taking.

GB-MSM trans guys were no different from other groups of trans people in the study with regard to sexual satisfaction. Sexual body image worries were assessed using a scale developed by Trans PULSE to capture trans-specific concerns such as not being seen as one’s gender when naked. Low relates to never or infrequently having this range of worries, while high related to often having such worries. For about 1 in 5 GB-MSM trans guys, these worries were very frequent, while for another 2 in 5 they were common.

Depressive symptoms are common among trans guys. Researchers found that trans guys had a decreased risk of depression if they experienced greater sexual satisfaction, and an increased risk if they experienced high levels of transphobia or were in a period of planning but not having yet begun a medical transition.

The majority of GB-MSM trans guys in fact  scored as “depressed”. However, the measurement scale used has not been validated for trans people, and given the extreme stresses trans people can be subject too, it’s considered unlikely that for most such trans guys, that this indicates what would be considered as clinical depression. However, this does indicate a high burden of depressive symptoms.

An estimated 16.9% of Ontario’s GB-MSM trans guys have experienced physical or sexual assault that they attribute to being trans. Many trans guys also reported experiencing assault, but were unsure as to whether it was a transphobic attack. An additional 36.1% experienced harassment or threats, but not assault. This indicates an extremely high level of violence that trans guys are subjected to, in addition to other types of violence they may have experienced in their lives.

Illustration © Dawn Hudson | Dreamstime.com

This article first appeared in The Positive Side, a publication of CATIE.  

Une version française est disponible ici. 

By Diane Peters

It was 1998 and Ian Nelson’s friends were dying. HIV positive for 12 years, he was feeling terrible on a dual therapy of AZT and ddI. “My mind was mush,” recalls the now 51-year-old Vancouverite. His management job for Canada Post involved a 6:30 am start time and intensive problem solving, and the stress and workload were becoming unmanageable. Feeling depressed and convinced that his health was about to seriously falter, Nelson went on disability leave.

At first, he relished spending long days at the beach. But, within months, boredom and depression set in, and he began taking acid and mushrooms, then progressively harder drugs. By 2000 he was addicted to crystal meth and living on government assistance, relying on food banks, yard sales and dumpster diving to eat.

In 2004, he suffered congestive heart failure. After being released from the hospital, Nelson came to the realization that he wanted to live. While doing outpatient physiotherapy, he began attending 12-step meetings and doing volunteer work with the AIDS service organization (ASO) Positive Living BC (formerly BC Persons With AIDS Society). When someone suggested he apply for a part-time job there the following year, his confidence was still so shot that he nearly didn’t go for it. But he found the courage, landed the job and a couple of years later was hired on full time as the ASO’s reception services coordinator.

Now, Nelson hits the gym three times a week, goes to the beach when he can and recently took his first holiday in eight years, to Oregon. He’s also recently restarted a daily regimen of anti-HIV medications. He thrives on the routine of his job, has built up his confidence and enjoys the positive energy of his co-workers and volunteers. “I’m so happy that I’ve met all these wonderful people. They would not be in my daily life if I was at home.”

 Work of ART

Ever since the late 1990s, when the advent of antiretroviral therapy (or ART) offered a means to effectively control the virus, people living with HIV have struggled with incorporating work into their lives. While HIV is no longer a one-way exit out of the workforce, staying employed has its complications. Many people are still simply not well enough to work, while ­others, who feel good and want a job, face barriers.

Even for those who feel good, that feeling of well-being may come and go. Living with HIV comes with periods of poor health when working is difficult or impossible, episodes that can have a serious impact on people’s health and income stability, as was Nelson’s case.

Of the estimated 65,000 people living with HIV in Canada, no one knows precisely how many are in the workforce. Sergio Rueda, director of health research initiatives at the Ontario HIV Treatment Network (OHTN) led a survey of 2,000 people with HIV in Ontario and found that 40 percent of the men and 48 percent of the women were employed. Rueda also analyzed data from a group of 1,525 HIV-positive men in the United States: 41 percent of them were continuously employed over 10 years, 25 percent were unemployed and 20 percent worked on and off.

Illness, fatigue and side effects such as nausea and ­cognitive problems make a 40-hour work week difficult or ­impossible for some people with HIV. Others who feel well find that working full time makes keeping numerous doctors’ appointments a logistical challenge. Depression, particularly for newly diagnosed people, can hold someone back from pursuing work or the education that leads to a career. People new to Canada may be juggling health ­concerns along with learning English and dealing with government paperwork.

Rules for getting and staying on income and medical support programs can also hold people back from taking a job. Many people feel programs such as the Canada Pension Plan Disability Benefits Program or private long-term disability plans are not flexible enough to take into account episodic bouts of illness and wellness. “Often you’re either in, or you’re out,” says Don Phaneuf, director of employment and volunteer services for the AIDS Committee of Toronto (ACT).

Figuring out if it’s worth it to stop a program and begin work, particularly part time, can be complex. ASOs spend a great deal of time helping clients decipher the rules. Programs usually reduce benefits, potentially also medical benefits, when other income is made. “There’s little incentive for people to work under these programs,” Phaneuf says. The result: Many stay unemployed (sometimes giving back through volunteer work) or find work for which they can get paid under the table.

 Work it out

Theresie Nuwimana is still exploring what it’s like to work and live with HIV in Canada. The 43-year-old knew of her status when she emigrated from Rwanda to Toronto in 2005. When she first arrived, she focused on learning ­English and then enrolled in a program to train to be a personal support worker. Once she began doing home care ­visits, however, she found commuting and working long hours to be too much. “I was exhausted by the end of the day. It ­wasn’t good for my health.” So Nuwimana went back to school and graduated this past autumn from a counselling and advocacy program at George Brown College.

However, her last placement at a women’s shelter also proved a challenge. Since she sometimes needed to start late to work around doctors’ appointments, she felt it wise to disclose her status to her supervisor, who was understanding and supportive. She did not want to disclose to any other staff, though it was hard to avoid their curiosity. Because Nuwimana worked shifts, she was constantly teamed with new co-workers, some who didn’t necessarily understand her need to work flexible hours or why she had yet another appointment. “I want to work in a smaller place,” she says. “What I really want to do is work in an HIV organization, where my co-workers will understand the reason I might have several doctors’ appointments in one month.”

No one starts a job knowing everything about it, and discovering what you need once you’re on the job is not uncommon. “It’s important for people to understand their tolerance for a bit of uncertainty,” says Melissa Popiel, coordinator of HIV and Episodic Disabilities Initiatives for the Canadian Working Group on HIV and Rehabilitation (CWGHR). “For example, you may not know in advance what your ­benefits plan will be like, or what the workplace culture will be.”

And not all jobs suit people with HIV. Many tend to avoid high-stress jobs and physical work that involves heavy lifting. Shift work can wreak havoc on sleep and med schedules. Those who experience cognitive side effects from their meds also have to take that into account when looking for work.

As well, an HIV-positive person may need the workplace to be accommodating in certain ways. “[People with HIV] should know that they have a right to be treated without discrimination in the workplace. That’s one thing,” says Renée Lang, staff lawyer at the HIV & AIDS Legal Clinic Ontario (HALCO), “but you also have a right to accommodation because of your disability.” Except for jobs under federal law (such as working for the Canadian government), the specifics of those rights fall under provincial labour standards and human rights legislation. “Most of the time, what clients are asking for is quite reasonable,” Lang says—access to a private bathroom, a place to store meds or a quiet room for naps or downtime. Most commonly, people are requesting flexible hours, like starting an hour later some days.

“Workplace accommodation is a process,” Popiel says. People taking on a new job should be sure they can do the core tasks—the accommodation would make small changes to the work environment so the job is accessible and not unhealthy for someone with a disability. While employees have the right to these changes, employers have rights too, and the law protects companies from making accommodations that would affect the success of their businesses.

Employees should be prepared to discuss options with their employer and know that if there are a number of appropriate options, employers can choose the one that best fits the needs of the organization. “If an accommodation isn’t working well, employees should talk with their employer immediately, so that the problem doesn’t become a performance issue,” Popiel advises.

To set up the right accommodation, people with HIV have to speak up at work. However, that does not necessarily mean disclosing their HIV status. In fact, most jobs in Canada do not require disclosure, and privacy and human rights law protects your right to not disclose.

While many worry that ill treatment of HIV-positive people in workplaces is common, Lang says  that, in fact, such cases rarely come up. “Frankly, we see more concerns about stigma and discrimination than we see it playing out.” (Discrimination on the job?  has more information about your options if you feel you are facing discrimination because of your HIV status.)

There are few occupations that explicitly exclude HIV-positive people, and even these vary across the country. For example, in Ontario, the only job that a person with HIV is not permitted to do is that of emergency medical technician (EMT, also known as a paramedic). Alberta has no guidelines around HIV status and this occupation. Physicians must disclose their status to their professional college but not to their employer or patients, and they can safely do their jobs thanks to universal precautions. (This was tested within the legal system after a Quebec pediatric surgeon’s HIV status was revealed following her death in 2003. The Canadian Medical Association stated that she had no obligation to disclose.)

People with HIV must reveal their condition to an employer’s health insurance company but even that is private. For instance, if human resources asks you to fill out a medical form and hand it to them, you can request to send it to the insurer directly. Lang says it’s important to never lie on questionnaires that ask if you’re taking medication or have underlying health issues. Just tick off “yes,” and use the comment section to say that your condition will not affect your work.

To get accommodation, a person must provide a doctor’s note, but that can state that you suffer from fatigue or nausea without revealing the underlying cause. By law, your employer can’t probe for more details.

Working freelance is an option that avoids dealing with an employer and a workplace, and it seems like the perfect job: work from home while running your own business. No office politics to stress you out, no rigid start time to interfere with sleep and meds, and no commute. Many people with HIV thrive as freelancers and find it’s the only way they can work and stay well. Others find challenges in this career path.

Such as John Smith. For years he was a successful self-employed retail consultant. But the stress of his HIV diagnosis in 2010 and feeling unwell made it impossible to work for a few months. Being at home alone, letting his business slide, did not help: “It made me reclusive and isolated.” Freelancers can lack the kind of social support those with traditional jobs often find at work. They don’t have access to company benefits plans. And the worry that comes with business fluctuating doesn’t help stress levels.

Smith soon got his health back on track and worked with Employment Action in Toronto to rebuild his resumé and find a full-time job. Going out every day, seeing other people and keeping busy has done a lot for him. “It gives me something to distract me,” he says. “I feel good about myself rather than staying at home and worrying about my illness.”

Positive payback

For people with HIV who do manage to get around the challenges and either continue working or return to work, the value is huge. In a recent survey study, OHTN’s Rueda looked at 18 previous studies charting workplace status and health. These reports revealed that working is not just associated with good health—since, of course, healthier people are more likely to work—but also that “these findings suggest causation,” Rueda says. “Employment leads to better health.” He also discovered in this study that losing a job can put a dent in your health, but going back to work later on can bump it back up again.

A paying job gives you money, which allows you to eat well, find a good home and, like Ian Nelson, enjoy healthful perks like gym memberships and vacations. In a 2011 survey of people with HIV in Ontario led by Rueda, people said the most important thing a job gave them was a sense of identity. “Work lets you be defined by what you do, not just by your illness,” says André Samson, professor in the department of counselling at the University of Ottawa. “Working is the normal experience during adult life. It is our main activity, it’s how we express ourselves and are a part of society.” As well, jobs can offer a social network to lean on when times are tough.

To capitalize on these benefits, some organizations are trying to remove return-to-work obstacles at the government and workplace levels. And not just for people with HIV: Arthritis, mental illness and some cancers—conditions that affect millions of Canadians—are also episodic disabilities that can affect a person’s ability to work full time. Organizations such as CWGHR are working with governments to change social support rules and educating workplaces about discrimination, accommodation and episodic illnesses. Their work is having an effect. For instance, when Popiel began speaking to human resources professionals four years ago, only a few had heard of the term “episodic disabilities.” These days half the room knows the term.

Services for HIV-positive people seeking work are also growing. People in Toronto can turn to ACT’s Employment Action to talk about career issues, spruce up their resumes and find jobs. Across Canada, people with HIV and anyone with a chronic illness can access CWGHR’s newly launched Episodic Disabilities Employment Network  (EDEN), a web-based peer support portal.

These changes are not yet enough to get every HIV-positive person who wants a job out there working for a regular paycheque. But they’re a start toward enabling people to build a future for themselves and showing the work world that HIV does not have to stop someone from contributing. People with HIV or other episodic disabilities have both a right to work and a great deal to offer to our society and economy.

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Diane Peters is a Toronto-based freelance writer and teacher. She writes about health, business, parenting and other issues. This article was researched with funding assistance from the Canadian Institutes of Health Research (CIHR).

 Illustrations by Raymond Biesinger

Hot topics in HIV & work

Newcomers – Many HIV-positive immigrants face unique challenges, including language and cultural barriers and a lack of understanding of how to navigate the Canadian job market—on top of the day-to-day struggles of living with HIV.

Retirement – Many HIV-positive people contemplating retirement face a big question about how to access drug and health benefits after retiring. As more and more people with HIV move toward retirement, this issue will become even bigger.

Policy changes – Finally, employers need help to understand the implications of new and upcoming policies designed to help protect people with disabilities in the workforce. In 2010, Canada ratified the Convention on the Rights of Persons with ­Disabilities (CRPD). As well, Ontario is in the process of implementing the Accessibility for Ontarians with Disabilities Act (AODA) and other provinces are looking at similar laws. Holding governments and employers accountable for putting these standards into action will help people with HIV enter and stay in the workforce.

Discrimination on the job?

If you’re being discriminated against on the job, or if you get fired—you suspect—because of your HIV status, there are ways to seek justice. If you’ve been at a job for a few years, it might be worthwhile to pursue fair severance through the courts with the help of a lawyer. Or, if you haven’t worked at a job for long, or you’ve experienced serious discrimination, you might seek damages through your province’s human rights commission. If you were seriously wronged, you could get an apology or even a monetary settlement.

But be forewarned: Seeking justice is not an easy process. It takes time and your previous employer might say some pretty nasty, even untrue, things. “If you put in a complaint,” says HALCO’s Renée Lang, “you’re going to hear stuff back that you don’t want to hear.”

Work tools

The following resources provide information or ­support on employment issues for people with HIV. To find support in your area, visit www.aso411.ca  for an AIDS service organization close to you. Or call CATIE at 1-800-263-1638 and we can direct you to a local organization.

Episodic Disabilities Employment Network (EDEN) 

Canadian Working Group on HIV and Rehabilitation (CWGHR) (check out Information for People Living with HIV)

Resources from Interagency Coalition on AIDS and Development (ICAD)  (search for the term “disability”)

Fact sheets on HIV and work from AIDS Calgary (on the Publications page)

Employment Action (a program of the AIDS Committee of Toronto) (serves the Greater Toronto Area only, but check out the Working and HIV/AIDS section)

Canadian HIV/AIDS Legal Network 

HIV & AIDS Legal Clinic Ontario (HALCO) (serves Ontario only)

This information was provided by CATIE (Canadian AIDS Treatment Information Exchange). For more information, contact CATIE at 1-800-263-1638 or This email address is being protected from spambots. You need JavaScript enabled to view it.

CATIE also maintains a blog on PositiveLite.com which you can find here.

Editor's note: It’s odd that PositiveLIte.com has never really featured a religious perspective of living with HIV in our pages before. But Brother Christopher Sale (below, right) happened to write to us and we were immediately interested in the prospect of him sharing his rather unusual story.

Christopher told me this about himself. “In 2008 I nearly died from AIDS and drug use. By the grace of God I'm still here. I'm now a Catholic religious brother. I'm the first openly gay man with AIDS to ever start a religious order in the history of the church. My journey with AIDS and being a Catholic brother has really changed my life. My first blog was Gutter to Grace. You can read it here. I'm 61. Went to Catholic schools. Taught 8th grade religion until I was bullied out by the students for being gay. I came out when I was 20 and went into a 25 year relationship. And as you can see I'm a totally changed person. I'm the founder of the Brother of Padre Pio and I'm trying to start the Padre Pio Help Center for those dealing with HIV and AIDS. I'm also involved with the homeless and poor. The church made my calling very difficult because of being my gay and having AIDS. But I broke down every barricade they put up.”

The following article by Christopher first appeared in The South Pasadena Patch. 

***********************************

Throughout my many months of blogging, I have not talked about the personal side of having AIDS. AIDS is my never ending battle of survival.

I am an extremely private person but I feel called to tell you about my 4 year journey of living with AIDS. The highs and the lows.

Three weeks before April 29, 2008 I was told that I was HIV-positive. Needless to say, the initial shock was overwhelming. I remember being in a state of confusion.

My first reaction was to deny the seriousness of my diagnosis. "OK," I said to myself. "Many gay men have HIV. In fact many of the men I know have been HIV-positive for years and seem to be doing just fine."

Two days later, I was sent to a clinic for a blood test. I didn't want to go for that second test. I talked myself out of the importance of the test. My roommate could see that my nerves were on edge and convinced me that I needed to go through with the blood test. He kept his promise and went with me.

I'll never forget that day.

I sat in a waiting room where HIV and AIDS pamphlets were on every table. Red ribbons adorned the walls. Reality was setting in. Other men in the waiting room were there for the same reason. I played mind games with myself trying to determine which was the sickest patient.

Trying to visualize my future brought tears in my eyes. I threatened to leave. My roommate consoled me. I took the test and was told to come back on April 29.

The blood test would reveal my T-cell count and would determine my condition. This caused me more anxiety. I was very ignorant about HIV and AIDS. It had been my understanding that HIV and AIDS are one and the same. I lacked education about it.

On April 29, 2008 I went back to get my results. The nurse's compassionate demeanor told me that my condition was serious. She told me my T-cells were 140 and asked me if I knew what that meant. As I told her. "No." She said, "It means you have full-blown AIDS."

The shock protected me from a full break down. She comforted me and told me of the options available with different medications. She said, "AIDS is no longer a death sentence." "No," I thought. "But it sure helps to numb reality."

She told me that my addiction to drugs was going to cut my life short. I had to stop using. How would I battle AIDS and drug use? Then she told me that I was anemic. My world was collapsing.

Depression took over. I got in bed and didn't say another word for days. I felt everything was useless, and I didn't care about anything.

Out of that silence came the realization that using drugs was the least of my worries. I used drugs to escape my reality. Flashbacks flooded my mind of men who died horrific deaths from AIDS. Not wanting to die a horrible death, I tried to overdose on drugs.

Another patient at the clinic asked what my T-cells count was. When I told him, his response was, "Oh you're terminal." Another uninformed person sentencing me to death. I later realized that we are all sentenced to death when we are born.

Those remarks only added to my depression, shame and self-loathing. I had done this to myself. My days were numbered, but they were numbered from birth. I indulged my morbidity and shopped for funeral arrangements, looked into getting a will, being buried or cremated, inquired to the suffering that I would experience and wondered how many exact days that I had left.

I wondered who would ever want to love me, hug me, touch me or cherish me again? Would I tell people upfront that I had AIDS or would I wait? Would this news be received as the plaque?

My roommate encouraged me to fight but despite his support, I felt utterly alone. The days of my life were numbered. I counted each day as precious and then these remaining days of my life were replaced with a deep vacant, emptiness of dying alone.

The mirror showed me that I was slowly wasting away. I became afraid to look at myself. A once well-built, healthy man allowed himself to self-destruct. I never dreamed that I would find myself with AIDS.

After a fall, I ended up at the local emergency room with a torn ligament and cuts on my face. I told the nurse I had AIDS and asked her to clean up the blood and put a bandage on me. She refused and handed me the bandage to put on myself. Not one person in the emergency would touch me.

I was at rock bottom. I went to bed and stayed there for a few months.

The day I got out of bed, I lethargically looked out my front window and became aware that life was passing me by. It was a vibrantly beautiful day, and everything seemed colorful and alive—people out walking their dogs, birds chirped in rhythm and the sun danced on the leaves of trees.

I realized that life wasn't quitting on me, I was quitting on life. A thought flowed through my head, "Time to man up and fight for my life."

I was determined to fight, new found energy pulsed through me, and I got in my car and headed for the nearest Catholic church. I began praying at the Church three times a day.

I had days where I felt that God did not give a damn, and I was wasting my time. I begged Our Lady of Guadalupe to intercede. I felt like a child running to his mother for consolation. I asked Her to help me, and I made a promise to Our Lady that I would devote the rest of my life as a religious brother.

Within three months, my T-cells went from 140 to 160. Not a big deal to some, but it was to me. I threw all the drugs away that I was taking to deaden the emotional pain and never had a craving for them again. This was nothing short of a miracle. I knew that no one could predict my death sentence and that my fate was in the hands of God.

My health returned to 95%. The past 4 years I have battled pneumonia and several stomach infections. I fear being in crowds, make sure I eat in clean restaurants and also maintain a clean living environment. Oftentimes, I feel as though I live in a bubble.

I have been miraculously blessed. I know with God in my life that I will be just fine. At 61, I don't foresee a cure in my lifetime. My stay of execution is at the hands of God. For the second time, God has called me to the religious life. My sexuality caused be to deny that first call but I answered His second call. Though I am battling AIDS, my life is entwined with the crucifix, and this is my cross.

Many people say I should be out living it up. They don't understand that I am living it up with God. God is my ultimate party. And everyday he grants me a new gift. The gift of life.

Br. Christopher Sale B.P.P.

This article first appeared on the website of Positive Women’s Network (PWN).

Stigma and discrimination are challenges for everyone with HIV, but women in particular can also face these issues:

• Women are more vulnerable to infection during unprotected heterosexual sex
• Women with HIV remain largely invisible
• Women face sexual stigma
• Power imbalances in relationships that usually favour men
• Medical care doesn’t acknowledge women’s risk for HIV
• Women are often caregivers with little resources for themselves
• Disclosure can be dangerous

Biological Vulnerability to Infection

Women are far more likely to be infected with HIV by a man during unprotected intercourse than to infect a man themselves. During unprotected vaginal or anal sex, semen stays in contact with women’s tissues longer than a man is exposed to her secretions, and even microscopic tears in tissue can lead to HIV transmission. Young women and post menopausal women, who have less resilient vaginal tissues, are particularly vulnerable. Undiagnosed and untreated sexually transmitted infections can also increase the risk. 

Women with HIV are Invisible

To the general public, women with HIV are still pretty invisible- it’s still largely seen as a disease of gay men or drug users. Women living with HIV are rarely mentioned, and if they are, it is usually women who live outside North America. As a result, women may not even know the facts about HIV transmission, safer sex, or where to turn if they do test positive. 

Sexual Stigma

Lots of sexual health information doesn’t reflect the variety of possibilities and potential risks for HIV transmission. When women talk frankly about their sex lives, they can be stigmatized as immoral or “deserving” of HIV. We’ve got to change this. Information needs to acknowledge that healthy sex lives can include a number of (male or female) partners in a lifetime and a wide variety of sexual acts. It also needs to acknowledge that women can’t always insist on safer sex and it’s not their fault if this is the case, because power imbalances exist (see below). 

Power Imbalances in relationships

Relationships are complex, and women don’t always have the say they would like. Maybe the partner limits access to friends, or withholds money as ‘a joke.’ It could be more extreme, like regular rounds of humiliation; telling her she’s useless and lucky to have her partner. If she’s positive, forbidding disclosure of HIV status is not unusual. If a woman is in a relationship with a controlling partner, she may not have access to essential medicines, support or information to help her stay healthy. This can also mean she’s not in a position to negotiate safer sex. 

Medical care that doesn’t acknowledge women’s risk for HIV

It can be difficult for women to find the information they need if they do not have support from doctors. One member of PWN said she had to convince a doctor to test her, because she didn’t seem “the type.” Media stereotypes of women who ‘deserve’ HIV don’t reflect the reality that anyone having unprotected sex could get a sexually transmitted infection, including HIV. 

Women of colour, immigrant women, aboriginal women and lesbians may face added discrimination via language barriers, racism, colonialism, and homophobia. This can lead to a misdiagnosis of the illness, and makes it difficult for women to make informed health care decisions. 

Women are caregivers with little time for themselves

Many women are caregivers to partners, children, and parents. Taking care of others means women have little time for their own health care. This makes it tough for women with HIV to access medical appointments, support groups, nutritional supplements, and other tools necessary to manage their HIV. 

Disclosure can be dangerous

For many women living with HIV/AIDS, disclosing their status causes reactions of anger, judgment and hostility. Women fear the loss of their children, jobs and community. Others worry about physical violence from partners. These fears leave women feeling very isolated and alone. Fear can also prevent women from accessing the support and information they may require in order to live with HIV

In the early days of HIV, gay men played a significant role in shaping the movement; not only because the gay community was severely impacted by HIV, but also because gay men were actively involved in providing services and programs. 

Since those early days, and with more effective treatments, it seems that many gay men living with HIV are less involved. Partly because of improved health and partly because of a shift toward services that address the specific needs of other populations. Gay men are in some ways disaffected from the movement that began in order to support them. 

But where did the gay and bisexual men go? Are they connected to other men living with HIV? Is there an importance to being connected? Are newly diagnosed gay/bi guys finding the support they need or are there those who remain “in the closet” about their HIV and are isolated, lonely and dealing with disconnection? 

The answers to these questions are not entirely clear, but here in Victoria, BC we’re finding that there are men who are not connected. There are men who are lonely and isolated; there are newly diagnosed men who have no association with other men living with HIV. And for those of us who are aging, the separation can leave us with a lack of support and “community.”

Some might say that we don’t need anything… Gay men are welcome to access programs and services as long as we’re comfortable in the settings provided. However, in dealing with the stigma of HIV as well as homophobia, there’s something to be said about creating spaces for gay/bi men to be together and develop community that speaks to their particular needs and interests. A place where being gay/bi isn’t an issue: a place for safe, supportive sharing and social interaction.

Here in Victoria, we’ve started to build those spaces. Positively Connected is a pilot project of Victoria AIDS Resource & Community Service Society (VARCS). VARCS saw a need to create something unique for gay/bi men living with HIV that includes social connection as well as support. In larger centres these programs exist already, but in smaller communities there may be a gap. This project is attempting to address that gap. Support can be anything from a facilitated group to one-to-one meetings in the community or hospital. Social activities range from a walking group to a pub night and coffee evenings. 

HIV is only a part of our lives. Positively Connected is working in concert with the Vancouver Island Persons Living with HIV/AIDS Society and AIDS Vancouver Island Men’s Wellness Program to develop activities and support that resonate with gay/bi men and link us together in meaningful ways. Creating the connections that open us to new friendships and that assist in maintaining our health. 

For more information or to get connected, please write to This email address is being protected from spambots. You need JavaScript enabled to view it. . You can also visit or like our Facebook page: Positively Connected Victoria BC. 

Michael Yoder has been living with HIV since 1984 and has been involved in the HIV/AIDS movement for more than 20 years. He is currently self-employed and is contracted as the Coordinator of the Positively Connected Project.