Sunday, July 5, 2009

Hcv the cost to a persons life.

There are certain realities of having and suffering from the Hep C Virus. These are above and beyond the facts of the disease. The treatment and side affects of the treatment drugs are often discussed and how to get over the whole process of clearing it from the body.
Rarely discussed are the long term social and welfare aspects of having this illness, so I thought I’d say a few words on the matter.

The virus long before it becomes active has an affect. Socially and physically on a person. For some it starts with a routine blood test and a positive report for anti-bodies. For others it is from an increasing awareness that there is something wrong with you, something that doesn’t feel quite right. But yet at the time isn’t a thing to worry a doctor about , so you don’t till much later.
For the majority of us we are living at a time that has been mapped out for us by our environment, work friendships and leisure practices. We plan for a future in which we are given a general expectation of living long enough to achieve the goals we set. The first hardship comes along when you receive a notification that you have Hcv anti-bodies. Generally this is delivered as a shock report from a doctor, who then tells you that you have a potentially life ending virus. Doctors in general do not have the compassion that a person needs at that time. It is not their fault , one must become hardened over time by having to tell people that they are in a state of health that may lead to death. That news in itself is a shock to a person. Yet as you absorb this news you are told that there is potentially life saving treatments that can maybe prevent this. So in one fell swoop you are given bad news and hope. This takes some getting used too. Your first thought is finding information about and obtaining this treatment. But I must say the problem doesn’t start there.

This virus could have been present for years and was slowly at work injuring your body. It’s slowness in itself makes it not noticeable at first. During this time it decreases your ability to work, drains energy so that you become less physical. Tired you become less sociable and friendships become more strained. The employers begin to notice a drop in production and more frequent days being off sick and their regard for you as an employee starts to drop off.  Slowly your earning potential reduces, and as it is so slow you adjust your life style ever down. But eventually there comes a time that your job becomes in jeopardy. Already your finances are strained as your earnings reduce. This is often when a doctors services and the bad news occurs. But already you are in a place not to be envied. The possibility of loosing your job has already come into your thoughts. Ill, with not a clue if you are going to get well and the chances of finding a reasonable paying job  all pray on the mind. Depression starts to set in, where do you go from here , how can you support your family. Each day brings the sickness more to the fore. So the average person sits worrying, the weight of the future crowding down on them. So already the affects of this virus has had serious repercussions. It puts a significant strain on the relationships in a family. Although contractible the illness isn’t contagious. But that isn’t understood by most people.So you worry, do you tell people in your sphere or do you keep quiet. If you do tell ,some people then shun you and in their fear and not understanding, tell others and a sense of isolation sets in.

You then start to think on if there has been a chance that you have passed the virus on and that plays with your mind. Eventually you find out about the Hep forums. They have their place but it is still not fulfilling the need inside. Loneliness is still part of your life.

Finances themselves are a major problem. With a long drawn out illness and an expensive, in a lot of ways ,treatment.  Months are spent worrying about getting on treatment, will you have enough finance to do the treatment and will you be able to earn enough. Then it is actually being on treatment, side affects and organ damage being distinct possibilities ,which try as you might you cannot get off of your every day thoughts. This is the loneliest time .Your self worth is questioned with the need to blame someone for what is happening and having no outlet anger and fear build up. It affects who you are and drives more people away. Unsure of yourself you retreat into  your own little space. you never get clear of this virus. Even if the treatment is successful for the rest of your time it remains part of you , the worry of what if.

There is so much more to say so I shall a little later.


PSPam said...

Good post! Most of us have gone through all the things you have talked about. I saw that you smile - sometimes. Please consider joining our HCV Support group at There are many people there who are very supportive and hopefully can bring a smile to your face more often. So MANY of us are dealing with this crummy disease known as HCV.

cdm said...

Great post.. I can really relate as well.....HepC so affects one's life in many ways.. I hardly have a social life at all because of the fatigue and flare-ups... Being involved in HCV Advocacy really helps...

CD Mazoff
HCV Advocate