Living with Hep C
Living with hep C is often a challenge due to the stigma associated with the condition. Fear and anxiety about what others think, however unfairly, can affect the way you behave. For example, it may make it harder to tell people what you’re going through, leading to feelings of isolation, which in themselves can make life more difficult. For some, the stigma of hep C may prevent them from seeking help.
It is important to remember that hep C is a virus; it is not something which defines you as a person.
Although you may feel alone, remember that other people living with hep C are likely to have similar feelings, and sharing stories can make you stronger. See the Support section for details of organisations who may be able to help, or take a look at Our Ambassadors to hear about others’ experiences.
It doesn’t matter how you got hep C – no one deserves it; everyone should have the opportunity to be free of hep C. We are all entitled to equal care and treatment in the UK. You are worth helping and treating.
Don’t let these feelings stop you from seeking help, as delay could affect the care you require.
See Treat and Manage for more information on how help can be accessed.
Top tips for staying positive when living with hepatitis C
- Learn what you can control and what you cannot. There are things you can control, that are related to hep C, such as your viewpoint and taking care of your health
- Make smart lifestyle choices. Think about what lifestyle factors could improve your overall health, as these can offer both physical and mental benefits. Consider eating a balanced diet, avoiding stress, and exercising regularly. It is also worth considering what activities might worsen the impact of hep C, such as drinking alcohol and taking drugs
- Be honest and realistic. Be informed and do not base your attitude on assumptions – thinking things are worse than they are, or better than they are, can be unhelpful
- Make sure you know the truth. Get accurate information about hep C from trusted sources
- Take things day-by-day. You will feel worse if you let your imagination run away with you, so take it one day at a time and try not to fixate on worst case scenarios
- Focus on the right things. Don’t focus on how you may have caught hep C; no one deserves it
- Hep C doesn’t define you. Accept your situation, but don’t overly identify with it. Hep C may be a part of your life, but that doesn’t mean it should control your life
- Learn more about hep C. Try and learn more about hepatitis C this can help alleviate any worries you may have. You can also view the Ambassador videos to learn more about other people’s experiences
- Get support. Being with others who are dealing with the same issues can bring encouragement and hope. See if there is an hep C support group in your area
- Seek medical advice. Speak to your doctor to find out what treatment and care options are right for you. Remember, you are worth the best care
Dealing with stigma associated with hepatitis C
How you contracted hep C doesn’t matter, so try to remember that you deserve the same level of care as everyone else. People who are living with hep C are often anxious about what other people think about them. It is important to realise that people infected with hep C come from all walks of life and all backgrounds. Hep C is a community problem that needs a community response, and eliminating stigma based on inaccurate stereotypes is a good place to start.
How can we do this?
- First, think about how you feel about hep C. Do you label yourself and expect to be shunned? Do you fear you will be rejected because of your hep C? What scares you about having hep C? The best way to deal with these feelings is to talk about them in a safe environment, such as a hep C support group. Here you can learn how others live with hep C. Please remember that no-one deserves hep C, no matter how you acquired it. This virus is not a punishment, it is an unfortunate but unintended outcome from a single event in your life
- Educate yourself and others. By understanding hep C yourself, you can help to eliminate inaccurate information in others
- Don’t criticise or blame others. Stigma comes from ignorance and fear. Educating others can be all it takes to change their mind
- Join a support or patient group
Talking to friends and family about hep C
Who you talk to about your hep C is entirely up to you and you shouldn’t feel pressured to tell anyone. However, there may be people close to you that, while the chances are very small, may be at risk of catching hep C. You should inform these loved ones of your diagnosis, support them in getting tested if necessary, and help each other to seek support and treatment. Talking to loved ones isn’t just for their benefit, having a dependable support network can help you cope with hep C and give you the confidence to overcome your illness.
In some cases, the people you choose to confide in may be shocked or react badly to the news. They may be worried about their health and what this means for them. To help reduce the shock in this situation, reassure them with these key hep C facts:
- Hep C is very difficult to pass on to someone else: it is transferred through blood to blood contact, and the chance of catching it through unprotected sex with a hep C positive partner – even after 20 years – is only 2.5% (around 1 in 40)1
- Hep C develops very slowly and may not cause symptoms for decades, if ever2
- If you do get symptoms, hep C is very manageable, and with the right course of treatment it is curable in the majority of patients2
Watch this video in which Tim explains how important it is to break down the stigma around hep C.
Adapted from HCV Advocate: A guide to: stigma & hepatitis C
For more information on coping with mental health and stigma visit The Hepatitis C Trust website.
1 http://www.hepcassoc.org/news/article27.html [date accessed: January 2018]