Diagnosis
When the person you live with first told you they were diagnosed with hepatitis C, you probably didnt know what it was. You probably thought it was just an illness which would only affect them and only temporarily. If youve got this far, you probably now know its a lot more than that. And thats the first shock. Its a serious, potentially life-threatening/shortening illness.
Education
After the initial shock of how big the situation you are being made to deal with is, inform yourself fully. It is still a relatively unknown disease, so finding accurate, trustworthy information can take a bit of work. Its a good idea to do this yourself rather than rely on the person who actually has the disease. They are dealing with the diagnosis in their own way and sometimes the information available is presented rather clinically and can be quite hard to read if youre the one theyre referring to. They will do it in their own time or ask you, if they think you know.
Please make full use of the information on this site. In particular, you may want to look at:
- how the disease progresses
- symptoms
- treatment options
- other sources of information
It is especially important to be clear and informed about methods of transmission and infection so your partner can protect you and others in the household. It is important to understand that it is quite hard for the person infected to acknowledge that they can be a danger to the ones they love so this is often a sensitive subject. However, they do need to understand that it is their responsibility to follow certain basic rules to prevent transmission.
If you are concerned that you have been exposed to hepatitis C, remember that just living with someone will not infect you. To become infected, the virus has to get from their system into yours, which in general means you have to have been exposed to their blood. To understand what this means in practice, please see Risk Factors. This will help you decide whether you need a test.
Support
What informing yourself will do is give you understanding and therefore, in all likelihood, compassion. These are immensely important if you want to be able to provide support and to do so willingly. However, because the effects of hepatitis C on an individual can vary from no symptoms at all to almost complete incapacity, so the extra demands that will be placed on you cannot be generalised. It is equally impossible to generalise about how someone will cope with the need for support. Some people find it difficult to ask for help; some find it hard to accept it; and some expect you to be able to divine when its needed and to provide it automatically.
Even so, it is worth flagging up some of the more common symptoms and looking at how these could affect you and what you might do to cope with them.
Mental symptoms
Brain fog
Some degree of mental confusion is often a feature of hepatitis C. You ask them to do something (pick up some stamps from the post office on the way home, say) and they forget. It is easy to take this very personally as a sign that they dont listen to you or dont care enough about you to remember. Remember that it may be only a chemical problem in their brain and also that it may be just as frustrating for them as for you. This confusion may make it hard for them to get the most out of doctor or hospital visits, so accompanying them can be enormously helplful.
Depression
This can make someone very withdrawn and uncommunicative. Again it is easy to take this personally, as a reflection on you. Worse, you can find that they are completely unresponsive or even angry when you make the effort to cheer them up. This is a complex area and sometimes all you may be able to do is encourage them to talk about it, even though you have to be prepared for little response. One of the most challenging aspects of living with someone with depression is trying to instil in them a more positive attitude in them (but not in an over-jolly irritating way) and not let their negativity affect you.
Stress
Very likely you will be living with someone in the grips of chronic stress and stress is like the common cold - very easy to pass on to anyone in the vicinity. On top of that, stress is an important factor in the damage that hepatitis C causes. So its not something to ignore. There is a major section on stress, including suggestions for managing it (link). You may want to remind the person youre living with of the various ways they can relax and de-stress.
Mood swings
People with hepatitis C often experience considerable emotional instability. In particular, they tend to have a short temper and be impatient and intolerant. The more you can get them to talk about their frustrations rather than taking them out on you, the better. It can be effective simply to point out how unfair it is to give you a hard time, since fundamentally it is their illness that is making them feel the way they do. You will often find that underlying their irritability is fear. Rather than reacting to them, try to encourage them to become open and vulnerable with you.
It can be equally as challenging for you if they do the opposite, telling youre they are fine and dont need any help when you can see that they are having a really hard time but are too proud to tell you. Sometimes all you can do is make the offer of help and leave it with them.
Physical symptoms
Fatigue
This is probably the commonest symptom so you should expect to be replied on to do more around the house, especially the physical chores like cooking, shopping and cleaning.
Digestive problems
These are also common and are often associated with loss of appetite. This can be very disheartening if you have made a special effort to prepare food that is then barely touched but it is important to remember that this is likely to be about their health, not your cooking.
Pain
The section on managing pain has many suggestions for alleviating pain. There are a number of forms of massage, such as foot massage, that are easy to give and can be remarkably effective even if done by someone who is not an expert. This is a very concrete way for you to give support.
Relationship strain
Whatever your relationship with the person who has hepatitis C lover, friend, family member, flatmate their disease is going to put pressure on it. This can happen in all areas, in particular:
1. Lifestyle Dealing with hepatitis C often requires a major lifestyle change. Suddenly perhaps, the person you used to party with has given up alcohol or drugs and now wants to do yoga and go to bed early. They may want to change their friends. All this can require considerable adjustment on your part.
2. Sex If this is your lover wer'e talking about, you may find hepatitis C has changed their attitude to sex. They may feel dirty or they may be obsessively concerned about infecting you or they may just be tired much of the time or their libido may flag. This can so easily feel as if you are being rejected.
3. Changing roles. Inevitably, whatever your roles before, they are now likely to be, at least to some degree, those of carer and cared for. If this is a major shift, particularly if its a complete reversal, adjustment can be challenging, to say the least.
4. Financial If the person who has hepatitis C is a breadwinner, there can be major financial implications. They may no longer be able to do their job or they may decide to stop working to concentrate on their health. If this stretches your finances, the pressure can make you think the worst that they dont care about you, that they are really just lazy, that they should be able to pull themselves together.
There is no simple solution to relationship problems but there is no question that leaving the issues and resentments unspoken and suppressed is not the answer. Sometimes it may be possible to sit down and talk it out between yourselves, remembering always that much of their behaviour may be the result of their illness rather than a desire to make your life miserable. Sometimes, however, the situation has become so emotionally charged that you will need the help of a third party. A good place to start for this is Relate (a counselling organisation for relationship issues). Their central number is 017858 573241 and there are local numbers in your local directory.
Support for you
Providing support for someone who has a serious chronic illness can be draining physically and emotionally. You need to recognise that you may require support. This is not a sign of weakness on your part; its normal and its recognised throughout the caring profession. And its worth remembering that, if you become exhausted yourself, you wont be able to help anyone else.
Nor is exhaustion the only thing to watch out for. You may well feel emotionally confused. You may be afraid both for the person who is ill and for yourself. What happens if they die? At the same time you may find yourself becoming resentful of the endless demands made on you, yet feel that you shouldnt feel this way. You may feel unappreciated, taken for granted. You may feel trapped in your role. And you may feel that you cannot possibly talk about this to the person with hepatitis C, because they have enough problems of their own.
There are a number of ways to get support for yourself. One of the simplest is to call one of the helplines for carers, such as the carers helpline on 0808 808 7777 Mon-Fri 10-12am and 2-4pm for practical support, or, if you are particularly involved with someone with depression, Saneline on 08457 678000 noon-2am daily. The Samaritans number is 0845 790 9090 and is open 24 hours.
Your GP may be able to offer support directly or may be able to refer you to a counsellor. Some counsellors are free on the NHS.
Treatment
This is the big one for you and the person you live with. The treatment is very hard work and it can potentially last for a year. For many people it is like having all the symptoms from the disease, except multiplied by a factor of ten. You cant be certain exactly how they are going to react to the treatment but you should be fully informed of the nature of the treatment and the possible range of side effects. You should talk together about it, as well as with the health professionals, as your life style will undoubtedly have to be adapted.
Before treatment is started, it may be worth discussing the possible role of counselling or other professional help with them, if you havent already. You may not feel you need it now, but if its been discussed in a more neutral situation, then, it is easier to raise it again when the situation is more charged during the treatment. This particularly applies to psychiatric help, as a major side-effect is severe depression, often necessitating anti-depressants.
In the first few weeks, the physical effects of the drugs are usually at their worst (extremely bad flu-like symptoms, shivers, aches and pains, nausea, serious fatigue etc) and the person on it will probably be spending most of their time in bed or on the sofa. So be prepared to do all the work and be helpful to them.
For the rest of the time on the treatment, the person you live with may work their way through the whole list of side effects or only suffer from some of them. Its easier to make allowances for them, if you know what to expect. Like the illness, some of the effects are obviously physical but the drugs can also have psychological effects, which, again, are harder to recognise as symptoms and therefore make allowances for. These include increased mood swings, intolerance, irritability and depression. Over a period of time, it can be particularly hard not to react to these changes especially when you are on the receiving end of them! As with everything in a relationship, if you can find a way to keep talking through it, it will help. Also, try and remember what your partner was like before the treatment and believe that that person will come back when the treatment stops. They may not want to talk about it when you do (and maybe not when theyre in the middle of a mood swing or depression) so try to recognise that they are dealing not only with the effects of the treatment but also with an illness which is threatening their life, so its a pretty hard subject for them at the best of times.
The treatment involves lots of hospital visits for monitoring, blood tests etc but the regular contact is vital and can be a positive source of help and support. Keep asking questions and insisting on answers.
The Results
There can be several stages of tests and results from the treatment and, again, it is very important that you and your partner fully understand the treatment and what the test results mean so you can prepare yourself and question the specialist.
Treatment, of course, doesn't always work. Worse, it can appear to work, only for the virus to reappear once the treatment is stopped
