Being diagnosed and living with any potentially serious chronic illness is a major life change. It can be a physical, practical, emotional, psychological and even a spiritual challenge. You are required to learn and understand new information about illness and health. You will also need to deal with new situations, confront feelings, thoughts and beliefs that you may never have had before. Sometimes it can mean lifestyle changes, on either a short-term or long-term basis.
Initial diagnosis or a change in health status can raise fears about the future and bring up thoughts and feelings from the past. You may be given new medical information or asked to make important decisions regarding treatment or health care whilst trying to decide who to tell and what to say. It is a lot to deal with, by any standards.
Trying to make sense of, and coming to terms with what your illness means to you personally takes time, effort and support. In addition, hepatitis C still carries a degree of stigma in our society, which can add considerable weight to the burden of dealing with it.
Some people will be diagnosed at a young age. These people and their friends may not be at a stage in their life where they have thought about issues surrounding illness or mortality. This can make it hard to find peers who can listen and understand, which can add to the sense of isolation.
Other people may find that a diagnosis or change in their hepatitis C status comes at a particularly difficult time in their life, maybe whilst going through other major life changes such as bereavement, relationship problems, recovery from addiction, issues at work or within the family.
Lack of understanding can lead to feelings of isolation, the exact opposite of what anyone dealing with an illness needs. Until you have some time and experience of living with hepatitis C, it can be hard to know who to talk to, who can help and what to tell them. Everyone has the right to feel secure and supported while working through feelings and reactions. It is nearly always easier and more effective not to do this alone.
Many doctors suspect hepatitis C is capable of actually causing depression by the way it acts on a person’s brain chemistry. Research in this area is ongoing. Some people experience depression before they are even diagnosed with hepatitis C. If it is of gradual onset, some of them may not realise it until they have the benefit of hindsight. They may never have made the link between depression and the physical illness.
Research suggests that stress and depression, especially over a long period of time, can affect the immune system. Some people find their physical symptoms are significantly worse when they are stressed, and improve when they feel more relaxed or supported. Feeling worse physically can be scary and depressing. It can potentially create a negative cycle of stress, physical symptoms, and more stress.
How could getting support help?
A very powerful way to break that negative cycle is to seek emotional or psychological support. Just being listened to and understood can make a real difference. It can break the sense of isolation and loneliness that often accompanies hepatitis C. Instead of having to cope alone, struggle on, or just 'waiting to feel better', you will be doing something positive for yourself. Doctors and other practitioners can treat or monitor your hepatitis C, but you will be doing everything you can to live with it.
As people feel more supported, they are usually able to think more clearly, communicate better, make healthier decisions, and generally manage their life and health more efficiently. Less stress can mean fewer symptoms or better management of symptoms, which then means less stress - and so the negative cycle becomes a positive one.
What kind of support might you look for?
You may find that the people who are normally there for you are unable to support you, or only able to support you in limited ways. They are likely to be affected by your hepatitis C and have their own feelings and reactions to it. They may well need some support themselves as they try to figure out what it means to them.
Even if they are able to listen and understand, you may need or want a separate place to talk about your hepatitis C. Sometimes, talking to someone close is difficult because of feelings of responsibility and wanting to protect.
There are a range of support options available. They tend to fall roughly into two groups;
- Peer support which involves talking to other people who have hepatitis C
- Professional support.
Some hospitals and clinics may even provide a combination of the two: groups of people with hepatitis C, led by professional counsellors or Health Advisors.
What you choose will depend on many factors, such as availability, finances, time constraints and whether you prefer talking to people in groups or individually. It will also depend on what you are hoping to get from it, and how your health is at any given time.
Hepatitis C support groups of any sort are a great way to meet other people living with the disease. The groups allow you to share information and experiences and to break the isolation. People with hepatitis C tend to be the first to know about new treatments, new research and new tests. Having access to all that knowledge can be very empowering. People who have been through similar experiences will be able to understand what you are going through in a way that others cannot. They are also likely to have valuable tips and insights to share.
If you do not have close proximity to a support group - you may want to explore the different online support options available from hepatitis C groups.
However, there may be times when you feel too vulnerable to hear about other people’s experiences. They themselves or their hepatitis C status may be at a different stage to your own. If you feel your process could benefit from more time and attention than groups alone can provide, individual support may be more appropriate. Remember too, that there is nothing to stop you having both.
Professional support may involve a group, such as group therapy or a facilitated patients' group. It may involve individual meetings with a qualified counsellor, health advisor, psychotherapist or doctor. Generally speaking, practitioners are bound by Codes of Ethics which guarantee you confidentiality, and sessions should provide a safe and non-judgmental environment in which to process anything you like.
Professional help varies enormously in terms of time commitment, financial commitment (private or NHS) and quality of support. The most important things to bear in mind when choosing someone to work with is whether you feel you can talk to them and whether you feel 'heard' when you do.
You may find you need to give your counsellor or therapist some information about hepatitis C, as many will not have specific experience of the illness. They, in turn, need to be willing to learn about it, in order to support you in your process.
When is a good time to seek support?
There is no 'right' time to seek emotional or psychological support. You do not have to wait until you are feeling depressed or stressed. It is perfectly possible to benefit from emotional support at any time. It may just be a way of feeling better about yourself and your life than you already do.
Feeling isolated, helpless or alone is an excellent reason to seek out some hepatitis C support. In addition, if you find yourself persistently experiencing any of the following signs and symptoms of stress and depression, it is a good idea to look for professional help:
- Feeling numb, anxious, panicky, angry, or weepy all the time
- Losing interest in life generally
- Feeling tired and 'dull' all the time
- Changes in appetite (eating too little or too much)
- Changes in sleep patterns (waking up early, insomnia, oversleeping)
- Loss of sex drive
- Suicidal thoughts
- Constant self-criticism or 'feeling bad about yourself’
- Loss of concentration
- Finding yourself caught up in addictive or self-destructive behaviours
Some of these, such as tiredness, loss of concentration, lowered sex drive, and changes in sleep and eating patterns, can also be physiological effects of your hepatitis C.
The symptoms of chronic hepatitis and those of depression can be confusingly similar. One can often impact on the other. It’s worth taking a two-pronged approach wherever possible.
You may also find that extra support is important around times of change, or potential change. Diagnosis, tests, treatment, the period following treatment, relapse or any other change in health status can be particularly stressful times. Such times can be made less stressful with appropriate support. The same is true for times when non-hepatitis C related areas of your life are impacted by your health.
Who else might benefit from emotional or psychological support?
Families and close friends can be greatly affected by a loved one's hepatitis C status. Often they are not offered any kind of emotional or psychological support. If someone you care about is diagnosed with hepatitis C, you may have many feelings, questions and worries about it regardless of their current health status. If you are living with someone with the disease, you are living with the virus as much as they are - albeit in a different way.
Illness, its management and treatment can raise all sorts of issues including:
- financial, if a partner's work is affected
- childcare during treatment
- how to minimize risk of infection
It can be very hard to keep talking openly and honestly about fears and feelings when both parties want to protect the other. A little help at the right time can go a long way to reducing stress.
It may be harder to find support groups aimed specifically at friends and family, but most hepatitis C groups are open to both patients and family. Helplines, internet groups and message boards can also be a way to meet others and share experiences, gain information and break the isolation.
Counselling is available either privately, or through the NHS by referral or at GP practices. If you feel that there are communication difficulties in your relationship or family, caused by the stress of living with hepatitis C, it may be worth considering couple or family therapy - again, this can be done privately or via referral on the NHS.
Deciding which support option works for you will be a totally individual choice. The important thing is to know you have the right to support, that it can and should make a difference to your experience of living with hepatitis C, and that it IS available.