HIVINE

HIV Diary of Adrienne Seed

I HAVE JUST READ THIS ARTICLE - HIV ON RISE IN EAST LANCASHIRE - ON THE LANCASHIRE TELEGRAPH'S WEBSITE AND I HAVE QUITE A BIT TO SAY ABOUT IT.

In reference to the amount of reported cases in the Burnley and Pendle, I believe there could be factors affecting the figures. As a large majority of people in Pendle will go to West Yorkshire's Airedale Hospital. Also HIV awareness and accessibility to testing facilities and support are not publicised to any noticable degree. The core support for the area is based in Blackburn with a one day a week clinic in Burnley. With the high rate of unemployment in this area the cost of getting to Blackburn or even Burnley in some cases for testing could lead to people not bothering to get tested. Big towns and cities such as Blackpool and Manchester have same day testing facilities, why can this services be brought to Burnley and more importantly Pendle - who seem to get forgotten about with all the main services going to Blackburn.

It has also come to my attention that East Lancashire Patient Care Trust are planning to cut HIV support services in Burnley and Pendle in March 2011 even further, due to the cuts being made by central government. This situation will leave many vunerable people without a local support and advice network. Leaving diagnosed patients without a support network and at risk of being left to cope alone.

What I believe the area needs is an increase in these services and a huge amount of publicity (compare to the total lack at present) - to remind people of the huge risk posed by the virus, and to advise people of the services and support network available. If the services are not given a much greater amount of publicity we could see a huge rise in the amount of cases due to unprotected sex or through drug users sharing needles.

If there was an increase in testing and cross-referencing with Airedale Hospital I truly believe the figures would be much higher.

To help fight the stigma of HIV it needs to be easier to be tested and people need to know where to go, how to get there, and be assured of confidentiality from both their own doctor and the testing clinic. The only way to assure an accurate assessment of any area not just Burnley and Pendle is to make it easier and less frightening to get tested by making sure people have easy access to basic information.

Also if people are tested positive they need to know they have a support network to help them, as getting a positive diagnosis can be very traumatic for some people and can lead to family breakups, isolation from friends, loss of employment, or even worse suicide.

Something needs to be done FAST to halt the proposed cuts in the essential HIV Support services in Burnley and Pendle before the situation is allowed to get worse.

Being told you have any illness is traumatic enough, but finding out you have contracted HIV can be a devastating and life-changing experience.

There are different ways people can discover they are HIV+, some people get themselves checked regularly, and are often more prepared for the result in some way. There are others that find out that a previous partner is infected and go for a test, again a little prepared for the result, but I think the most frightening way to find out is the way I did. That was with a phone call from a local clinic asking me to go for a test after a previous partner was diagnosed and gave my phone number to contact me.

I know I am not alone in this, but it is a most frightening experience to receive a call out of the blue asking you to go for a test, even though you may be feeling quite healthy and not showing or feeling any signs of illness.

Driving to the clinic, I really didn’t know what to expect. I had all different scenarios running through my mind, maybe I was going be ok... but, what if I’m not? Am I going to die? If I am infected how much more of my life is going to be left? Have I infected anyone else unknowingly? Who can I tell about it? What would my family say if I’m found to be HIV+? Will I have to stop working? What is going to happen to my body? – All this was spinning round my head on the journey, and also while sat in the waiting room to go for the test.

The test itself is a simple enough procedure, but along with a blood test I was given a complete check for other things such as Hepatitis B & C, Gonorrhoea, Chlamydia, and several others. I was checked inside my anus, and my penis, a very uncomfortable and embarrassing experience.

Then came the wait for the results, which proved to be worse than the drive over to the clinic in the first place. But I must admit the Health Advisor I spoke to explained a lot of what to expect should I get a positive result, but no amount of advice can prepare you for that phone call – when you are called to the clinic being told ‘We need to see you as soon as possible’ – My heart sank and my fears rose. I was shaking uncontrollably and had to stop my car as I took the call (on my headset) while driving. I managed to get myself home, although the rest of my journey after the call is pretty much a blur, along with the following few days.

I went back to the clinic and got the results officially, but I knew from the ‘We need to see you as soon as possible’ that the news wasn’t going to be good. The good news was I was clear of everything except HIV, but they still needed to do another test just to be sure – but at that point I couldn’t really take in anything I was being told – I didn’t know what to do or who to turn to. I knew about the stigma attached to people with HIV and I have a number of friends that have been infected but I never imagined that I could be one of them. It wasn’t like I had a lot of different partners, and I was never one for 1 night stands, but it only take 1 person to infect you, which is true of many viruses.

My biggest concern has been to ensure the fragile connection with my family wasn’t disrupted by this news and I’ve had to hide it from everyone except those connected with my care. So, like I’ve done with most things in my life, I’ve been dealing with it alone, with no friends to tell for support, and putting on a brave face for people so they would have no idea of the torment I was going through.

I made up reasons for being ill, to cover the side effects of the medication I am taking, and that cover story seems to have worked up till this point. I find it very hard hiding such a serious truth from family and friends but due to the stigma of the disease, letting people know you are HIV+ is almost as frightening as the illness itself.

Like I said, for the first 10 months I dealt with my medication and its effects alone, without the comfort and support of family or friends. I have only recently disclosed my HIV status to 1 person because I was forced to, not because I wanted to, and it was the most difficult thing I’ve ever done. But at least I can be sure that this person will not disclose this information to anyone.

Also in the past few months I have been invited to Thrivine, the group chaired by Adrienne Seed, who herself has lived with HIV for many years. Groups like this one are a lifeline for people like me who live alone, and due to society’s inability to see past the label or stigma of HIV, have to hide the fact from everyone around them. These groups give people the chance to discuss the disease and pass on each other’s experiences and help those newly diagnosed to see that life can still be good.

Recommended Sites

THRIVINE
Support Group for People Living With and Affected By HIV in East Lancashire
HIV Travel Restrictions and Retreats
This site gives advice on Travelling and Places to visit for people with HIV.
HIV Travel Insurance
A company that provides Travel Insurance, as well as Life Assurance, Funeral Plans and Mortgages for people with HIV.
Atlantis Media UK
Low Cost, High Quality Web Design, Graphic Design, Joomla Templates and more....