If you are thinking about whether or not to share your hepatitis C diagnosis with others, here is some guidance about how to talk about it.
In this page:
Who should I tell?
It is entirely up to you who you decide to tell.
Your specialist care team will advise you to contact anyone you think may have been at risk of contracting hepatitis C. This way, they are able to get tested and receive treatment if needed.
You might also want to think about telling someone close to you to help support you through treatment.
When deciding whether you think anyone else should know, think about the people in your life and consider:
- Who can you rely on to offer practical support? (e.g. helping you get to medical appointments)
- Who can you rely on to offer emotional support?
- Who has been helpful to speak to about your worries in the past?
- Who accepts and loves you?
- Who respects your privacy?
- Who is trustworthy and a good listener?
- Who might be affected by your diagnosis? (e.g. your partner, those you live with)
Opening up to others about your health can be very difficult.
Not knowing how people will react may make you feel worried about their response.
The fact that hepatitis C is sometimes stigmatised and is not well understood may make you feel like you want to keep your diagnosis to yourself.
However, this may make you feel isolated and can have a negative impact on your mental health.
Choosing to tell a few people you trust and that support you can make a big difference to how you are feeling.
I was worried about telling my sister but once she knew, she was able to be there for me and supported me with childcare when I needed it most.
If you feel like you cannot tell anyone you know about your diagnosis, you can always contact our helpline. Our helpline is run by people who have been diagnosed with hepatitis C and gone through treatment.
What should I say?
Lots of people do not know very much about hepatitis C. You might want to start by telling them that the virus is curable and is only spread via blood-to-blood contact.
If you are feeling worried about the conversation, it might be helpful to write down what you are going to say and to practice saying it.
It might also help to speak to your healthcare team to see if they have any advice or have any information leaflets you can share with others.
People might have a lot of questions about hepatitis C because they do not know much about it. Having a leaflet to hand will help them understand hepatitis C better. You could also show them the information on our website.
Think through how you might respond if the person’s reaction is negative. Even those we love and trust most do not always react how we expect them to.
Whatever happens, we are here for you.
Call our helpline if you are in need of support before or after you tell people about your diagnosis.
Should I tell my sexual partner?
There may be a very small risk of passing on hepatitis C while having sex and your specialist care team will advise you to tell sexual partners so that they can get tested.
Because hepatitis C is transmitted via blood-to-blood contact, sexual activities that increase the potential for exposure to blood are considered higher risk.
Telling your sexual partner you have been diagnosed with hepatitis C allows you to decide together what protections you would like to put in place to prevent transmission. They can also decide if they want to get tested for hepatitis C.
If you find it difficult to tell ex-partners and sexual contacts that you have hepatitis C, a healthcare professional can contact them for you. They can do this without giving any of your details away.
Should I tell the people I live with?
Hepatitis C is not spread through casual contact such as sharing cutlery, towels, kissing, or hugging.
The people you live with have a very small chance of contracting hepatitis C if they have come into contact with your blood. Your specialist health team may advise you to tell them so that they can get tested.
If there is a risk that the person you live with may have been exposed to hepatitis C, you might like to mention that getting tested is easy and that:
- if the result is negative, it will give them peace of mind
- if the result is positive, hepatitis C can be easily treated and cured.
Should I tell my employer?
There is no obligation for you to inform your employer you have hepatitis C, unless you are a healthcare worker.
Choosing to tell your employer may have some benefits.
By letting them know, it can allow your employer to make reasonable adjustments, such as reducing your workload or allowing you extra time off work for medical appointments. Some employers will also be able to help you access extra support at work.
If you tell your employer you have hepatitis C, you are protected under the Equality Act 2010.
If you decide against telling your employer, and you need to take time off work because of hepatitis C, then you will still be required to provide a statement of fitness for work certificate.
You can obtain a certificate that lists the symptoms you are experiencing that prevent you from working – such as fatigue, muscle aches, or depression – rather than one which states you have hepatitis C.
However, if your employer is not aware that you have hepatitis C and you later find that you are unable to carry out your duties to the same standard as before your diagnosis, then you will not be protected by the Equality Act 2010.
For further advice and guidance about your employment rights, visit the ACAS website or contact their helpline (0300 1231 100, Monday to Friday, 8.00am to 6.00pm).
Do I need to tell insurers?
Existing life insurance does not usually require you to disclose you are being treated for hepatitis C. However, if you have any insurance that is renewed on an annual basis, such as private medical insurance, then you may need to tell the insurer.
It is important to remember that any information you provide to your insurer forms part of a legal contract. If the information is inaccurate or fraudulent then it may render the agreement invalid.
Read the small print on current or new insurance agreements prior to either disclosing or entering into a contractual agreement. You may also wish to contact the insurance company anonymously and ask them some questions about disclosure.
If your health insurance is part of your employment contract, you will need to find out if you must go via your employer or if you can go straight to the insurer.
Is there anyone else I should tell?
Although there is no legal obligation to do so, you may find it appropriate to tell anyone who may come into contact with your blood while they are working with you.
Professionals who may be exposed to your blood could include:
- Hairdressers/ barbers
- Nail technicians
Giving them this information will allow them to take any extra precautions in order to protect themselves and other clients.