Diversity in Living with chronic hepatitis B

#ValueYourMind interview about living with chronic hepatitis B

There is life after hepatitis B diagnosis and everyone can play a role in it. That's the message Nafisa Yussf and Linh Nguyen, both activists and women living with chronic hepatitis B, wants to share as part of the MHAHS hepatitis B campaign in support of the NSW #ValueYourMind Mental Health promotion.

1. Nafisa Yussf

Introduction: My name is Nafisa Yussf and I am from Somalia and I have been living in Melbourne for the last 14 years.
 
Question: Why did you agree to participate in the Hepatitis B campaign?
Answer: I decided to participate in this campaign because I want to raise awareness about what it is like to live with hepatitis B, so we can all take tangible actions because it is a serious condition.
 
Q: Can you tell us a little bit about the time you were diagnosed with hepatitis B?
A: I found out that I had hepatitis B in 2007. At the time, I was in high school completing my VCE (Victorian Certificate of Education). I was feeling very sick and I was constantly exhausted. I was so tired that I couldn’t do anything. It’s not your usual tiredness, for example after a long day at work, but a chronic fatigue where you constantly lack energy. So, I went to my local GP and that’s how I found out that I have chronic hepatitis B.
 
Q: What would you say to someone who was recently diagnosed with hepatitis B?
A: If you are diagnosed with hepatitis B, I would like to first of all say that you are not alone. And this might sound a bit clichéd but you really aren’t. I would like to say to you “find your tribe.” And what I mean by this is support. Whether that is other people who are affected by hepatitis B, your family or friends.  You want people who understand what you are going through and can support through your journey. So find your tribe.

Secondly, be your own advocate. Talk to your doctor. Initiate discussions and ask questions that you might have because this is affecting you. Some doctors might not know much about hepatitis B, so you are the expert of our own experience.

And thirdly, I would like to say that if you are diagnosed with hepatitis B, knowledge is power. Learn more about hepatitis B. The more you know, the more confident and safe you are around transmission, treatment and so on. And also you are able to combat any misconceptions around hepatitis B when speaking with others.

And finally, make sure you are being monitored by your doctor to stay safe and try to live an active and healthy lifestyle. But most importantly, hepatitis B does not have to define who you are. You can lead a relatively normal life. You can still have a family, friends, you can study, work and so on.

Q: How has hepatitis B affected your life?
A: Hepatitis B has affected my life in a number of ways. Obviously being on treatment is one thing, but also it means I am not able to take part in simple activities due to fatigue and not having enough energy. For most of us, it means that hospitals have become our second homes; with ultrasounds, blood tests and doctor appointments every 3 to 6 months.

Q: How has your hepatitis B diagnosis changed you?
A: Hepatitis B has definitely made me more knowledgeable in this area. In my language we only have one name for the three different hepatitis viruses (hepatitis A, B and C) and that is usually interpreted as hepatitis A. Because of this most people don’t take hepatitis B as a serious disease and people aren’t aware that it can cause cancer.
 
Q: How can the community support people diagnosed with hepatitis B?
A: I want to say to our community leaders, “let’s have a conversation about hepatitis B. You are the gate keepers of our communities. So let’s have discuss hepatitis B within our communities so there is more awareness and understand about hepatitis B and also to eliminate stigma and discrimination.”
 
Doctors
I want to say to our doctors, “you play a vital role in this. You are at the forefront to initiate and discuss hepatitis B with your patients in a culturally competent manner. So please have a conversation with your patients about hepatitis B even if they do not bring it up.”
 
Family
I want to say to families and friends, “learn more about hepatitis B so you can support people living with hepatitis B in your circle.”

Media
I want to say to our media, particularly community media, “speak more about hepatitis B so that it’s something that’s normalised, because over 200,000 people are affected by hepatitis B in Australia.”
 
Many people living with hepatitis B face stigma and discrimination and I certainly see this in my work where family members have been isolated, where they are not allowed to eat with the family or share food or even share the same room. Or where people believe they can get hepatitis B by hugging or shaking hands with someone and these are incorrect. Hepatitis B is preventable and there is a vaccine for it, and obviously we can’t get it through hugging someone, shaking hands with someone or sharing food with them. But one of the biggest challenges for me is there is so much misconception, there is so much of the unknown of the hepatitis B in communities.

At the time of my diagnosis, I wish ... there were others who were speaking about their experiences and that it was something that is normal for people to speak about.
 
Looking after yourself means… staying healthy and fit, not only physically but mentally as well. That’s eating healthy foods, drinking plenty of water and try to get as much exercise as you can.

 2. Linh Nguyen

Introduction: My name is Linh. I am from Queensland and I am from a Vietnamese background.

Question: Why did you agree to participate in the Hepatitis B campaign?
Answer: I decided to participate in the campaign because I want to let other people, especially the ones in my community, know that you can have a very normal life living with hepatitis B.

Q: Can you tell us a little bit about the time you were diagnosed with hepatitis B?
A: I found about my hepatitis B diagnosis in 1995. At the time I was in hospital for a check up for my first pregnancy. Upon hearing this diagnosis, I was very shocked and very scared, not knowing about the disease, and the doctors were blunt. That was it. That was how I found that I had hepatitis B.

Q: What would you say to someone who was recently diagnosed with hepatitis B?
A: I will say this…get a regular blood test, …ultrasound and have a great lifestyle, which is just to go on, do your normal things and really enjoy life the best way you can. Because it’s gonna be a long, long journey and the best way is to live your life the best way you know how. Hepatitis B does not define me. How I choose to deal with it, that defines me.

Q: How has hepatitis B affected your life?
A: Hepatitis affected my life in many ways. At first I was scared, and then from there, I tried to come to terms with it. And then after that I found a good doctor to support me … I just have really regular blood tests, stay focussed and be happy, be content.

Q: How has your hepatitis B diagnosis changed you?
A: Hepatitis B has changed me in many ways. It has made me more resilient and resourceful. I don’t always find the right doctor at first, but I certainly keep going back and find that one doctor that is helpful, understanding. Understanding not just the disease, but also understanding me and my circumstances.

Q: How can the community support people diagnosed with hepatitis B?
A: I want to say to community leaders that “each and everyone of us would like to be supported in hepatitis B.”

Doctors
“Be kind and use less medical jargon.”

Family
I want to say to family and friends, “be supportive and ask simple questions like , ‘how are you?’ “

Community media
“Be kind and get the message out there. Get the hepatitis B message out there.”

At the time of my diagnosis, I wish ... I had known hepatitis B could lead to liver cancer.

Looking after yourself means … I always live my life the best way I know how. I get up in the morning happy. I smile that I am at work. I go to work, I get my child from school, go for a walk or run depending on the day how I feel. And you know what? On a day that I feel like eating ice cream for breakfast, I will do that. Basically it means be content with the person that you are, and try not to be anything else or an image that you think is ideal. I do all the things that I love and all things I not so much love - exercise and running …I know it’s good for me.  If that makes sense to anyone out there….there you go!