Compassion fatigue is where people who once were supportive of you run out of support and empathy. In relation to bc, it may manifest in friends, family and colleagues gradually being less empathetic or reducing contact over long bc treatments.
It doesn’t always happen but can sometimes creep up on you and suddenly, and you are in an unsupportive environment. So it’s really important to be prioritise support for your family as well as yourself during a bc journey right from the beginning.
How to recognise compassion fatigue
Compassion fatigue can manifest itself in some of the following behaviours:
- Depression or burn out. Your support person or carer, partner, family member or friend may not in a good state. This person may have reached the end of his or her tether from caring and worrying about you.
- Unsupportive behaviour. Partners and children once worried about you now appear annoyed and frustrated by your inability to participate as usual in family activities.
- People disappear. Family and friends reduce contact in the short or long term. People close to you may go on long holidays to recharge or your support team or carers are missing in action.
- Six months. What I have noticed is that many people are super supportive at the bc diagnosis stage (sending flowers and lovely cards). But perhaps six months down the track, people can be scarce.
- Difficulties at work. Colleagues at work may have been initially supportive but now seem to treat you and bc as an irritation “oh it’s been six months so she must be better by now”. However, if you’re doing chemo, you may feel a lot worse at the six month mark.
For the bc survivor, it is painful to watch your loved ones in distress but also difficult to experience distant or seemingly uncaring feelings from people, especially when you may be going through a really hard time in your life.
What causes compassion fatigue?
Compassion fatigue occurs because of the following complex factors:
- BC is difficult for our loved ones. I’ve often felt that bc can be harder on our loved ones than us. When you are going through bc treatment, you have a goal and lots of appointments to get through. You are often busy and know that you will get through this. For your carers and loved ones, they worry about you and see you in distress and there is not much that they can do about it.
- Burnout. Often at the beginning, people try to really be there for you but find they run out of fuel in the tank. It is very hard to maintain that level of support and intensity. Your loved ones may have cared and worried about you very much and can no longer do it as it is negatively affecting their health. They may need support for themselves, especially during a long treatment regime.
- Practical issues become too much. There are lots of practical issues that are left to partners and families when cancer enters the family e.g. doing additional childcare, house work and cooking while working full time AND caring for their loved one. All of these additional tasks do take their toll and it’s important to get help with the extra work.
- Carers putting their needs second. Everyone has needs that have to be met but when a crisis hits, people often put their needs last in the short term. However, this can not be maintained indefinitely and at some point, people have to put their needs first again.
- No support. Your supporters may not have support themselves. The bc survivor often has good support systems and for us females, lots of healthy ways to talk about or express our feelings. Sometimes for the men in our lives, there aren’t the same avenues for expressing upset, worry, fear and stress. Our carers may carry a heavy burden for a long time without sharing that with anyone. These feelings need to be acknowledged and expressed in a healthy way.
- Lack of education and understanding about bc. Some people around us do not understand that the effects of chemo can be cumulative and you can feel worse at the end of six months of chemo, rather than better. For people undertaking chemo or extended treatments, things do not return to normal overnight and fatigue and other side effects may linger on for months or years.
- ‘Lack of life skills. We are all human and it takes an advanced skill set to communicate, support and care for an ill person, while looking after yourself as well, especially for a long period e.g. a year or longer. People often don’t know what they need to get their needs met until they are gone.
- Perhaps relationships were not that strong to begin with. If so, putting the pressure of bc on top of this will cause some issues.
What to do about compassion fatigue
It’s important that everyone gets their needs met as everyone needs support. I always say cancer is about support, support and support. And this is true for our loved ones too. In an ideal world, our support crew need a support network, regular breaks, counselling and to live their lives normally as much as possible.
I think families need support right from the beginning. People need explanations on what is about to happen to them and skills to cope through the duration of the bc journey.
13 Tips on preventing and helping with compassion fatigue
Preventing compassion fatigue:
- Acknowledge that supporting someone with bc is a big job and requires a roster or team of supporters. Maybe there are four or five people who can rotate and take you to chemo appointments.
- Change your expectations. Do not rely on one person to be your rock. It sounds lovely and romantic but is not how humans work. People need to have regular self-care to recharge.
- Seek regular support for your partner and family from the beginning. Ensure that they know who to talk to (e.g. a counsellor or nurse at the Cancer Society) and participate in things that help them with their fears and worries (e.g. art therapy or support programmes).
- Celebrate as much as possible milestones, birthdays and anniversaries. Have weekends away and go to restaurants for nice nights out if you can.
- Don’t talk cancer all the time with loved ones. They are often not equipped to have these conversations if they do not have experience in this area. Talk to the specialist cancer counsellors and nurses who can really help you.
- Be active. Encourage your family and friends to get exercise, get outside in nature and keep up with some social events.
- Communicate as much as possible with your supporters and find out what is happening in their lives.
- Taking a break is also important. Supporters need a break and to be really rested.
- Get help with practical issues e.g. cooking, housework, childcare and get financial support if you need it.
- At work. With work colleagues, it can be tricky to educate them about bc. If they are being unsupportive, if you can, take sick leave and ask your specialist to write a letter to your manager and HR manager explaining the reality of the situation.
If compassion fatigue has struck:
- Let them go. If people need to take time out, it’s important that you let them do that, even if it is upsetting for you. You are strong and can handle this.
- Encourage your loved ones to accept support and advise your support team of all the support and help available. E.g. at the Cancer Society.
- Get support for you. You may feel isolated or abandoned. So ensure that you get your needs met.