opinion & features

many still think it is a disease for gay men and addicts

When Joanne was diagnosed with HIV in 1997, her doctor told her that she had four years left to live.  As a mother of two living in Ottawa, the news hit hard and the 43-year-old now living in Windsor was full of confusion and fear,

“I didn’t know what to do.  I kept asking, ‘where do I go from here?’” Joanne says, reflecting on her initial reaction to the diagnosis.  Since then, Joanne has defied the initial prognosis of four years and lives with her 12-year-old son in Windsor. She has been living with HIV for over 13 years and has witnessed many changes in the face of HIV.

“When I first was diagnosed, I took 32 pills every day.  Now I am down to five.  There may not be a cure, but there is definitely advancement in treatment.”

The drastic change in Joanne’s medication regiment demonstrates the advancement of treatment of HIV/AIDS since the original onslaught in the late 1980’s.

Joanne was fortunate in that her diagnosis came just one year after the release of highly active antiretroviral treatment (HAART), which generally removed the death sentence that had previously been HIV diagnoses.

However, this medication does not come without a price though, and many people with HIV experience side effects like diarrhea, vomiting, fatigue, headaches, neuropathy and more.

“I feel sick almost every day,” says Joanne, “and because of my neuropathy, I’m in an incredible amount of pain.  But I’m alive.”

To manage her pain, Joanne uses holistic techniques, such as massages, in an effort to avoid pain medication.

“I don’t want to live life in a fog,” she says, “so I don’t take the pain medications, even though it is almost unbearable.”
Another Windsor resident, Jack, also knows the price of medication but he knows what life was like before HAART too.  When Jack was diagnosed with HIV in 1994 HAART wasn’t available yet.

“I tested positive when being told you had it was a death sentence,” Jack says, “it was like my future was totally obliterated.”

The year after his diagnosis the medical community announced an effective treatment of HIV. “HAART gave us hope,” Jack says.  And fortunately for Jack, he was recently told by his doctor that he will die of old age before AIDS,

While medication may have changed the face of life with HIV, what plagues many people with HIV/AIDS is the discrimination and stigma surrounding the disease.

“HIV isn’t killing us anymore,” says Jack, “stigma is.”

For Jack, who has worked with AIDS service organizations across Canada, stigma, marginalization, social isolation and loneliness are the major issues facing people with HIV today.

“There is still so much misunderstanding when it comes to HIV, “ Joanne says, “people still think it is a disease for gay men and addicts.”

Joanne contracted HIV from a male partner who had been positive for many years and did not find out until after Joanne tested positive.  Now she works with young women recently diagnosed to help them work through the issues they will face, such as dealing with the stigma and discrimination. Reflecting on her own experience with stigma, Joanne remembers the way her family doctor treated her after he found out she was positive.

“He would only see me when he was in full gown, with gloves, a mask, everything.  He’d never worn those things before and it made me feel terrible.”

Joanne was consequently fired from her job after her employer found out she had HIV and doesn’t think there has been a lot of change since then in discrimination and stigma regarding HIV.
Jack agrees, “(the stigma) hasn’t changed a bit in the 16 years I have been positive.”

What has changed however, is the efforts of AIDS-related organizations to address issues of stigma through ad campaigns, research and attempts at general awareness.  The reported success of these efforts is mixed but as far as Jack and Joanne are concerned, things are just as bad as when they were diagnosed.

“The reason there hasn’t been a change is that we haven’t done a good enough job normazling [HIV],” Jack says.  “It’s a blood disease, but you add a sexuality component to it and with the shame in our culture around sexuality, how could they change?”

Jack spends part of his time now advocating on behalf of people with HIV in an effort to make more people aware of the experience and help normalize it, which he sees as the solution to HIV.  Joanne feels the same way,

“People discriminate because they don’t understand,” she says, “and then people only start to care about HIV when it affects someone close to them.”

For Joanne, education is the most powerful tool and she does a lot of work public speaking whenever she can in an effort to bring the message of her experience to more people.  Jack, who also does some public speaking and tries to use himself as a model for normalcy.

“What I’ve found,” Jack says, “is that people will reflect back the level of comfort about HIV project.  If I show people that I am comfortable being HIV positive, that I have a good and rich life then maybe they will start to understand that HIV doesn’t make you a pariah.  If we want people to normalize it, then it’s my job to model away.”

As for the services available for people with HIV/AIDS, both Joanne and Jack see a lack in the tangible services available.  “Unfortunately, many ASO’s lack in services for long-term survivors,” says Jack, “and what many of us need are chances to get together, share in community, and fight social isolation.” For Joanne, the services lack for other reasons,

“As a heterosexual woman, ASO’s sometimes forget about the challenges we face.  I run a female support group but maybe 2 people come regularly.  What is going on here?  Women are afraid, they don’t know that these types of groups exist or they think that they are just for junkies and hookers.  ASO’s need to reach out to help these women because they are suffering.” In spite of this, Joanne and Jack agree that the types and diversity of services are growing but both stress that there is a long way to go.

Over 20 years since the original onslaught of HIV/AIDS, Canadians continue to grapple with its many issues.  For some, it is out of sight out of mind, but for others like Jack and Joanne it is a permanent part of their everyday life.  Fortunately, medical advances makes life with HIV possible but unfortunately, similar advamces in social support and understanding are decades behind where they should be.  Joanne, when reflecting on her experiences with discrimination and stigma over the years really sums it up,

“We’ve come so far but we have so much farther to go.  HIV isn’t going anywhere, at least not yet, so it is up to us as a society to help people better understand HIV and hope that by curing them of their ignorance we can help stop discrimination in its tracks.  That is the real change we should be working for”

­—Denton Collander is a Windsor-based freelance writer. To comment on this or any other article in Outwords, e-mail editor@outwords.ca