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Telling people

It is entirely up to you who you decide to tell. When you first receive your diagnosis, only you, the person delivering the result and any other healthcare professionals involved with your test will know your status.

Your specialist and/or GP cannot reveal your status to anyone else as they are bound by a Code of Ethics and certain laws surrounding confidentiality. The only people they can notify about your status without your permission are other healthcare workers who may be involved with your monitoring.

It can be a difficult task deciding who to tell, but there are a few factors you might want to consider. If you want help and support you will need to tell certain people in order to get that support. It is also worth bearing in mind that as soon as you tell someone you have hepatitis C that information is no longer in your control. Because of this you might want to think about who you might be able to trust with that type of information before you share it

Is there anyone that must know?

This depends on your individual situation. In general, any contracts you have in which health is a significant issue are likely to require a disclosure. 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’s 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.

It is advisable to 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 have to go via your employer or if you can go straight to the insurer yourself.

Although there is no legal obligation to do so, you may find it appropriate to tell people you work with who may come into contact with your blood, such as your dentist. This will allow them to take any extra precautions in order to protect themselves if necessary.

There is no obligation for you to inform your employer. If you need to take time off work because of your HCV, then you will be required to provide a statement of fitness for work certificate. These do not necessarily have to state that you have hepatitis C. They could just as easily relate to the symptoms you are experiencing that prevent you from working, such as fatigue, muscle aches, and depression. If your employer is not aware of your status 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 have any legal recourse under the Equality Act 2010. If you notify your employer, then you will most likely be covered.

Telling people

Telling others about long-term medical conditions can be very difficult. Not knowing how people will react can cause the sufferer an enormous amount of strain. The fact that HCV is sometimes stigmatised often adds further problems and can cause the anxiety around disclosing your diagnosis to escalate.

Things to consider before disclosing a HCV infection:

  • Making sure you can give clear and factual information to inform them.
  • The need to protect yourself.
  • The need to protect others.
  • The support you may or may not gain from others by telling them.

Before deciding to tell someone else it may help to consider a number of questions that may help you to focus on whether disclosure is necessary or helpful:

Why do you want this person to know?

Are you concerned about transmitting the virus to this particular person? For example, are they your current or past sexual partner, or someone you have shared risky behaviour with in the past? In each of these cases you may feel you have an obligation to tell the person. This will allow you to help protect others.

Maybe the person has been worried about your health and you feel they deserve an explanation. Telling them may also help them to understand what it is you are going through and dealing with. Maybe you feel the person will be able to provide you with support. Or maybe you simply feel the need to tell someone.

Maybe you are considering telling your employer. This may or may not be necessary or beneficial.

What response do you expect to get from this person?

This is important to consider. Remember that you have no control over how others respond to your news. Some responses will be positive, but others may be negative. Ask yourself if you’re ready for either response. If you are coping well with your condition and feel you want to tell others you may well decide that, regardless of their reaction, it is the best thing to do. You may be unsure about how you feel about your condition so are seeking emotional support. If this is the case, it may be wise to consider whether you feel strong enough to deal with any negative responses. It is always important to consider how best you can protect yourself.

What do you hope to gain from telling this person?

Ideally, the disclosure of your diagnosis to someone else will be beneficial to you. These potential benefits might include sharing the burden with someone else and getting more support for your condition. They may also include having someone there who you can to talk to and work through your problems with. Maybe there are practical gains to be had through telling someone else. You might find that this allows you to take any necessary time off work, reduce your domestic chores, or get financial and practical help.

Once you have weighed up the pros and cons and finally decided to tell someone, you should then consider when and how to do it. The way in which you do this may influence their response to the news.

If you had been unwell for some time, with no apparent explanation, being told you have hepatitis C may have come as a relief to you. But your diagnosis may also have come as a shock and difficult for you to come to terms with it. The person you want to tell will probably respond in similar ways. They may be relieved, shocked, angry, confused or worried.

Considering these responses may lead you to think carefully about when and where you tell the person, especially if they are likely to look to you for information and support in coping with the news.

How do you tell someone?

Of course this will vary depending on who it is you are planning on telling. By putting a plan together it is likely to make the task easier on both yourself and the person in question. It is also possible that it may help you to explain how you are feeling about the diagnosis.

How you tell someone and where you tell them may influence their response. Try to remember how you felt when you were told. Was there anything about how, when or where you were told which made it easier or harder to accept?

Also try and consider a number of ways the person might respond. That way you will be prepared and ready with information or reassurances if they need it. Try to consider who could be a potential source of support for the person? This could include a close friend, a family member or possibly someone involved in your own care.

Accept that they are likely to have fears about your condition. You might need to tell the person where they can get more information or direct them towards other sources of support. The Hepatitis C Trust helpline – 0845 223 4424 – is a useful resource for families and friends of people with HCV requiring both information and/or support.

Try to give the person time to adjust to the news. Expect them to experience a number of different feelings, like you may have done when you were given the news. Once you have told them it might also be useful to agree upon another time when you can both talk over your feelings and concerns.

If you are finding it really difficult to tell the person, you may want to consider asking someone involved in your care. Someone like your GP, clinical nurse specialist or consultant will all probably offer you help here. Perhaps the person could accompany you to your next consultation where your diagnosis could be further explained to them by a qualified professional

There is no tried and tested method of successful disclosure. In general, a planned approach is certainly worth considering. Not only will it encourage you to consider all the possible outcomes, but it should also encourage you to explore the best ways of dealing with them.