Does it really matter?

by Opiferum
March 20, 2014

Story telling has always been a powerful medium for humans to express their experiences, so as to share with an audience that might be moved and enlightened by the details of a personalized series of events.  Each of us has a very unique story regarding our lives spent with or without the hepatitis C virus (HCV).  As well, we all have a distant memory of when we discovered being infected with the virus and how it felt to hear those impending words, “You’ve got hepatitis C.”  But can you remember when it came to trying to explain it to someone else? No doubt you can, whether it was your GP, liver specialist or a loved one asking the dreaded question, “So how did you get it?”  Your first thought might have been, “Does it really matter?”  It still might be that you do not think it really matters, especially if you have undergone treatment and come out the other end without the need to think about these things anymore.  But the way in which a person comes to be infected with hepatitis C does matter, even if someone chooses not to disclose it.  

Yet discussion amongst people living with hepatitis C often focuses on the question of whether source of transmission really counts.  On the other hand, much debate circulates about the level of risk associated with certain behaviors known to spread the virus.  Whilst the majority of current HCV infections are a result of unsafe drug use, surprisingly, this isn’t always the topic of conversation, either.  Not surprisingly, there still are many, many people living with hep C that are too scared to come forth and admit to the way in which they were infected.  Some people argue that it does not matter how an individual was infected with HCV.  When someone says that it doesn’t matter, it could be their way of trying to help someone feel better who might be affected by stigma because of a past or present history of drug use.  After all, the hep C virus is often assumed only to affect “druggies” or “junkies”.  Whilst such unacceptable language is slowly fading within the hepatitis C community, for those that remain ignorant and know nothing better, this kind of discriminating language and association still prevails.  

If the way in which a person gets infected with the hepatitis C virus was simply not an issue, then awareness regarding the fact it is a blood-to-blood disease would not be a point in need of further clarification.  After all, why not just say it is a disease of the liver that can lead to cancer? Simply because it is not just a disease of the liver.  More specifically, it is a blood-borne virus that infects the liver and will lead to cirrhosis of the liver if left untreated.  What is more, the way I was infected with hepatitis C is not necessarily the same way in which you were infected.  Between you and I, there are similarities and differences that might also reflect the chronological timeline of the virus, such as when some sources of transmission were previously very risky but are not so much anymore, such blood transfusions.  Today, I belong to the highest risk group, not to mention the most stigmatized and therefore marginalized: people who have a past or present history of using drugs which has led to exposure to the virus.    

The way in which you or a loved one came to live with the hepatitis C virus is a very personal and sometimes sensitive subject. However, it can also be a question with an answer that can help the HCV community to build a much greater awareness, if only we can all take the time and effort to remain mindful and knowledgeable of each other’s experience.  From our personal stories, we can learn from one another how to bring our attention to where it might not have been focused previously.  We can create a more extensive support system as we continue to become more mindful of what it means to live with hepatitis C, because hepatitis C simply does not discriminate for the reasons we might.  When a person comes forth with their story, it also allows for someone else to see and feel first-hand that it is ok not only to live with hepatitis C, but to own their own unique story, too.  

Visit Opiferum on Facebook

-------------------------------------------------

Taking stress out of hepatitis C

by Opiferum
February 25, 2014

Stress is a part of life in today's fast lane. From sitting in traffic to spending too much time worrying about the future, there are plenty of forms of stress. As we all react to stress on an individual basis, what might be stressful to you is a very personal experience. Therefore, the way in which we recognize and manage stress is vital, especially if you live with hepatitis C. After all, the effects of stress on liver disease are numerous. They include decreased hepatic (liver) blood flow, severity of liver disease, elevated ALT levels, liver cell death and worsening of liver disease. Reading a long list of symptoms is stressful enough to read, so it is no wonder we can find ourselves suffering from stress without even realizing it. So ask yourself, do you know when was the last time you were stressed without realizing it? Identifying unrecognized stress is a task in itself, as it is so easy to push stressful thoughts into our subconscious where they will lay dormant. Sometimes, this is not only the most difficult form of stress to identify, but prevent. After all, it is impossible to guarantee when stress might strike. Self-awareness is a great way in which to realize for yourself how much unrecognized stress affects those of us living with the hepatitis C virus. Let's take a look at some ways in which to reduce stress.

S - strive for flexibility;
T - take time to decide where your boundaries are in a relationship;
R - relax and take a deep breath, as sometimes, the time it takes to breathe is all it takes to realize that a step back is the safest place to be;
E - eat hep C friendly food, because it will put less stress on your liver;
S - sleep when your body is telling you it needs rest;
S - seek clarification, because we can make wrongful interpretations of a situation based on second-guessing what the other person is thinking (or doing).

Such simple steps might sound silly, but there is a lot to be said about “keeping things simple”. This is because stress is more often a build up of reactions we store without realizing. Now that social-media is a large part of our modern world, we are faced with more pressure than ever before. Red-flag alerts, notifications and spam now command our attention on the internet. We might spend more time making comments on social networking sites than taking the time to talk to our loved ones, face-to-face. As well, we are at risk of not feeling safe on the world wide web. Have you had a holiday from the internet recently? If not, take the challenge and you might discover just how much less stressful it is to keep up with the virtual world!

Stress is like a toxic weed, it can grow in any condition without any food or nutrients. All it needs is a person not to be aware of it. Sometimes, the best way to deal with stress is to tune into one's self and truly feel what it feels like, so as to know what it really is. Not knowing how stress feels is almost more stressful than stress itself! For those of us that live with the hepatitis C virus, our reactions to situations might be more sensitive. This can make us more vulnerable to stress, which is why knowing how stress affects you is a unique and wonderful way in which to help reduce it. With just a few minutes per day, it is possible to learn to live with stress in a healthier way. It might just be as simple as becoming more flexible, or eating healthier food: it just depends on YOU.

--------------------

Taming the Dragon

by Opiferum
January 30, 2014

The phrase “chasing the dragon” means to inhale the vapour of heated morphine, heroin, oxycodone or opium that has been placed on a piece of foil. On the other hand, the phrase “silent” or “yellow dragon” refers to the hepatitis C virus (HCV). Small difference, big coincidence? After all, hepatitis C is so often cited as a disease that results from opioid drug use, one could easily be mistaken for thinking there is a connection! In Chinese medicine, the liver is represented by a dragon that is said to store anger. This seems like a more plausible explanation, however, it also illustrates how the same word can mean very different things depending on the context. Even though the “dragon” with respect to smoking drugs has no connection to the hepatitis C virus, it just demonstrates how the words used with regard to hepatitis C can also play upon very different meanings depending on the context. Sometimes, the result is not helpful for reducing HCV-related stigma. Perhaps this is why we not only need to “slay the dragon” with medical treatment, but also start “taming the dragon” with language instead.

Leading up to World Aids Day last year, The Stigma Project released some fantastic projects that promoted the elimination of stigma of HIV & AIDS on a global scale, “through awareness, art, provocation, education and by inspiring a spirit of living HIV Neutral.” This is something that desperately needs to be achieved within the hepatitis C affected community, too. One of the key lessons given by The Stigma Project is how to refer to a person that lives with HIV. Instead of saying that a person is “HIV positive”, for example, the non-discriminating way in which to do this is to refer to someone as “living with HIV”. Haven’t really thought about when you refer to in yourself as hepatitis C positive? Don’t worry, you have probably been labelled as “hep C positive” for so long by doctors or family, that it’s kind of hard to ignore (or deny). However, you have the right NOT to feel that your disease is what makes you who you are, simply because of living with it. Nobody living with the hepatitis C virus needs to carry the “hep C positive” label, which in itself instantly sends to other a fear inducing message that, “I am infectious”. Furthermore, describing a person as “living with hepatitis C” is indeed a more accurate description. After all, it’s not as if people living with cancer are called “cancer positive” or “cancerous”.

Let’s look at some other commonly used terms within HCV-related literature that also adds to unnecessary instances of stigma inducing concepts. The most harmful include “drug abuse” and “drug addict”. Whilst there is no arguing that hepatitis C is an infection that grossly affects people that inject drugs, it is simply unforgiving to refer to “drug abuse” as a way in which hepatitis C is spread. Not sure why? Well, it’s quite simple, really: not all drug use is abuse, and not all drug use is high-risk. As well, just the reference to “drug abuse” with respect to HCV transmission links a person’s conscious to the sordid stereotype image our society associates with a “drug addict” or (even worse) a “junkie”. More importantly, the term “drug abuse” makes no distinction between licit and illicit drug use. Rather, referring to “drug abuse” in relation to hepatitis C always affiliates the disease with illicit drug use: it creates a division based upon ideas related to “lawful” and “unlawful”. As well, it makes the assumption that people that inject drugs must also share needles - by default. With respect to HIV/AIDS education, the distinction between “safe” and “unsafe” sex is commonly accepted. It only seems fair to distinguish between “safe” and “unsafe” injecting drug use.

As well, when referring to “drug abuse” without a second-thought, the common perception is that only illicit drug use can fall under the umbrella of “drug abuse”. After all, how often do we hear the term “alcohol abuse” with respect to cirrhosis of the liver? Instead, we typically hear of “heavy” and “binge” drinking, or “alcoholism”. The terms are not used interchangeably, despite the fact they can all be classified as forms of “abuse” because of the short- and long-term effects. But because alcohol is a legal substance, “alcohol abuse” simply does not exist in our language because “abuse” carries with it a totally different moral discourse.

How successfully we can eliminate the stigma attached to hepatitis C and those that live with the virus is something we can definitely achieve by making better choices of our words. As the old saying goes, Think twice before you speak, because your words and influence will plant the seed of either success of failure in the mind of another. - Napoleon Hill (1883 - 1970)

----------------

Hep C and Happy Holidays!

December 20, 2013
by Opiferum

Having hepatitis C at this time of the year is not easy. Christmas and New Year’s is typically fuelled by an indulgence of rich foods high in fat, not to mention drenched in alcohol. But the holiday period is also seen as a time during which people get together and celebrate a Hallmark perfect life. No wonder there is yet a card that reads “Merry Christmas” with a picture of someone sitting by the fire-side self-injecting a weekly dose of pegylated interferon. Having to deal with living with the hepatitis C virus is hard enough without the extra burden and stress that Christmas brings. More than any other time of the year, this is when people affected by the hepatitis C are likely to feel the crippling effects of discrimination and isolation. This is because there are some families that simply refuse to have their hepatitis C positive loved one at the Christmas dinner table. So, what can you do to get through the holidays with hep C?

Firstly, be aware of your self-talk. This is a time of year when it is easy to fall into negative-self talk. Factors such as feeling isolated or not measuring up to those picture perfect images on Christmas cards certainly contribute to this. Therefore ask yourself, What is my attitude towards this time of year? It is perfectly ok to acknowledge your feelings about Christmas. There are no “right” or “wrong” feelings to have about Christmas, either. However, if you are drowning in negative self-talk, then maybe it is having a disempowering effect on you that might be causing more stress than is necessary. Instead of using words like “don’t” and “won’t”, for example, try to re-word your phrases to exclude these kinds of negative words. Instead of telling yourself, “I don’t like Christmas at all,” exchange it for a different kind of self-talk, like “Christmas is just another time of the year; I will look for something to like about it no matter how difficult.” It might be as simple as appreciating Christmas lights in the neighbourhood, to feeling a heightened sense of gratitude for the fact you can empathise for those that are in the same position as you.

Be careful of what you eat and drink. At this time of year, there is a universal tendency to overindulge in fatty foods and alcohol. This is because rich food and drinking are all associated with the act of celebrating. Trying to excuse one’s self from not over indulging is difficult, unless you are the sort of person that is lucky enough to be surrounded by people that are aware of the importance diet plays for those living with hepatitis C. If you feel pressure to celebrate Christmas by eating and drinking too much, then prepare for this by bringing your own stash of non-alcoholic beverages for you to have at the dinner table. Another way to help your liver get through the Christmas menu is by requesting smaller portions, or even excusing yourself as a vegetarian. There are plenty of creative ways to get around having to eat too much, or over imbibing in the traditional Christmas drink.

If you are on treatment… It is difficult enough to live with the unpleasant side-effects associated with interferon and ribavirin, but having to deal with the extra stress this time of year brings is another thing altogether. If you are on treatment, then make sure you have enough medication to get you through the holiday period. Know exactly when your next doctor’s appointment is, so that you do not have to stress about when it might be. Having people around you that understand your situation is ideal, even though not necessarily the case for everyone. If you are feeling anxious about getting through the holiday period, then consult your local community centre or hepatitis council for the names of support groups that might be able to make a difference. There is someone out there that will listen to your needs, even if it is just by making a post to an on-line support group.

If you are not on treatment… A lot of people have put off undergoing treatment for hepatitis C because of the well-known harsh side-effects associated with interferon and ribavirin. However, we are entering a new age of therapy for hepatitis C that are not only proving to show incredibly high rates of success, but with side-effects easier to manage. As well, new treatments for hepatitis C are showing to be very effective with previously harder to treat genotypes (namely 1). Where medical treatment is fully subsidised by the Government (i.e. Australia and New Zealand) then be sure to enrol yourself at the local liver clinic (usually a part of the gastroenterology or infectious diseases department of a hospital). Wherever you are, make the most of the clinical services that are available to you. Get in sooner, as this will not only benefit your liver in the long run, but also secure your right to treatment in the future.

Christmas and New Year are both calendar events that are here to stay. The best form of self-care is awareness and prevention. Stay on top of the silly season by laughing it off, or looking for other safe and healthy things to do. Taking care of both your mental and physical health might be more challenging at this time of the year, but with the right attitude, you can do it. May you all manage the testing time ahead without forgetting to look after your liver.

Wishing you all a very hepatitis C friendly Christmas and New Year,

Opi.

Guest Blogger -- Opiferum

December 02, 2013 The Cost of an Unfortunate Mistake

November 17, 2013 HCV is for Hope, Courage, Victory.

 

Updated December 07, 2013 11:20 pm EST

The Cost of an Unfortunate Mistake

December 2, 2013
By Opiferum

The other day, I read how the newly released sofosbuvir treatment for hepatitis C will carry a price tag of USA$80,000 = $AUD87,727. That is certainly a small fortune, comparable to a deposit for a nice house in Sydney, Australia; or an above average salary. Whilst I could never save up that amount of money myself, I am therefore very grateful that the cost of treatment will be fully subsidised by the Australian Government's Medicare system. Whilst I was already aware that the drugs for hepatitis C are very expensive, I just still can not come to terms with the fact that sofosbuvir will be nearly three times as expensive as interferon!!

Thinking of the USA$80,000 price tag also got me wondering about whether it might lead to a new wave of discrimination against the most highly affected group infected with the hepatitis C virus: injecting drug users. Considering that recent reports in the UK reveal that the sharing of needles is still occurring in countries where needle and syringe programs exist, will it unnecessarily follow that the high price of new hepatitis C drugs may lead to a greater expectation for injecting drug users somehow to prove that they are not going to be at future risk of reinfection? But aren't we all automatically entitled to receive health care, irrespective of race, gender or sexual orientation?

Sometimes, I empathise with the fact that doctor's do not want to prescribe such expensive drugs for the treatment of hepatitis C to a user group that may still be actively engaged in an activity that represents 60% of hepatitis C virus infections world-wide. I can understand their frustration, as after all, to see a person come back reinfected due to unsafe injecting practises (and yes, this does occur despite the fact there are needle and syringe programs in place across Australia, New Zealand and the UK that offer injecting drug users access to sterile equipment) is, arguably, a considerable waste of money. And time, and effort (especially if treatment is repeated). However, there is concrete evidence to suggest that the treatment of hepatitis C among injecting drug users can effectively reduce transmission. Is this not the hope for all of those affected by the virus to effectively reduce transmission?

Then I got thinking about how alcohol and tobacco cause so many health related problems that also require expensive health care treatment. However, the difference remains that these products are taxed. Is this a reasonable argument for the legalisation of illicit drugs, or not? After all, the money the Government miss out on in the way of tax for the sale illicit drugs is in the millions! More importantly, is this also the reason for why those that consume heavily taxed substances, such as cigarettes and alcohol, effortlessly receive expensive health care? As opposed to those that do not? As someone that is living with an infectious disease as a result of illicit drug use, I feel strongly that there is an obvious gap that can only be described as grossly unfair. To determine if a person should be entitled to health care based on their individual preferences is simply a form of discrimination. Sadly, this is a reality that a lot of injecting drug users (past and present) still face today. In my humble opinion, it merely indicates that the Government desperately needs to review the harmful laws regarding drug policy.

If anything, I am still feeling so overwhelmed that I will receive such an expensive course of treatment for a very unfortunate mistake I once made. Whereas last time, I never planned to stop injecting drugs, this time, I know I have. If anything, I am looking forward to the peace and mind that if, in the future, I receive another blood test that indicates the virus is still detected after treatment, then nobody will be able to accuse me wrongfully of sharing needles ever again. Because even though I am by no mean anti-drugs, or anti-drug users, I am certainly not in favour of being treated discriminately anymore for any reason.

Personally, this will be a peace of mind that I consider priceless, forever.

------------