Emotional wellbeing and myeloma

Being diagnosed and living with the ongoing challenges of myeloma stirs up all kinds of thoughts and emotions, which will be different for each person. Everyone living with myeloma will need some type of emotional support, which can come in many forms.

The emotional impact of a myeloma diagnosis

Each person will deal with the news that they have myeloma in their own way. 

You and your loved ones are likely to be experiencing a whole range of thoughts and feelings, such as shock, confusion, anger and sadness — as well as questions and fear about what the future holds. You may feel numb, overwhelmed, or have a sense of disbelief or denial that this can’t be happening to you, especially if your diagnosis was unexpected. You may also be feeling positive and motivated to take on the challenge — and that’s okay too. For some people, reaching a diagnosis of myeloma can finally provide the answer and a sense of relief about why they have been feeling unwell for some time. 

It’s helpful to know that all of these thoughts, feelings and questions are very normal. Over time, your emotions might change, and they may ease as you begin to adapt to a new way of life. It’s also very important to know that you don’t need to manage this intense experience by yourself. 

Building your support network

Sharing how you feel and building a support network can help you to feel less isolated and manage better – now and into the future. 

• You might like to start by talking through your feelings with a partner, close friend, or family member.
• It can also be helpful to talk to someone outside your immediate support circle. You might like to talk to your GP, another health professional, your community leader, or other trusted spiritual adviser. 
• Our Specialist Myeloma Nurses understand many of the issues you are dealing with, can answer your questions, and put you in touch with other support services.
• Sometimes, you just want to talk with someone who’s been in your shoes and knows what it’s like to live with myeloma. That’s where support groups can help. Myeloma Australia has many Information and support groups throughout Australia.

When my husband was first diagnosed with myeloma, it felt like a black cloud was hanging over our heads. With the support of the nurses at Myeloma Australia, I feel more optimistic, and it’s more like a grey cloud following us now.

– Carolyn, Victoria 

Additional support for your mental and emotional health

Even with these support networks, there will be times when living with myeloma feels overwhelming, or feelings of distress, anxiousness or a low mood don’t improve and make it difficult for you to relax, sleep, concentrate, or feel any joy. It can help to know that it’s quite common for people with myeloma to experience anxiety or depression – and that there is a lot that can be done to help:

• If you think you may have signs of anxiety or depression (or you are caring for someone who is showing these signs), it’s really important to talk to a healthcare professional as soon as you can. 
• Start by chatting to your GP, who can recommend and link you to a counsellor, psychologist or psychiatrist who they think can best help you. Your GP might suggest creating a Mental Health Treatment Plan, which means that Medicare will pay for part of the cost for you to see certain mental health professionals. 
• A mental health professional may suggest talking therapies, medicines, or a combination of these to help you feel better. 
• After you have started feeling mentally well again, it’s really important to keep up your support networks and draw on the sense of community and strength they can offer at any stage of living with myeloma. Many people find that the people they meet through a support group – whether online or in-person – become some of their most meaningful friendships for life. 

Relationships

Being diagnosed and living with myeloma will affect everyone in your family and your network of close friends, bringing different challenges to each of you and the way you relate to each other. 

Your family and friends may experience a range of emotions, in a similar way as you. And they will have good days and bad days, just like you. The people who are closest to you have the challenge of wanting to be strong for you while also coming to terms with their own feelings. 

You may find that myeloma strengthens some of your relationships, while straining others. 

If you have a partner, myeloma can cause new challenges in your relationship and will often change the dynamics and roles you each have. 

Communicating as openly and honestly as you can with the people closest to you can help to lead the way and let others know that they also have permission to share their feelings and needs. 

Remember that relationships are often the greatest source of joy and comfort in our lives. Making time to talk with and do the things you have always enjoyed with the people you care about will continue to be an important part of your life and wellbeing. 

Talking to children about myeloma

We understand you may have questions about talking to your children or grandchildren about myeloma. 

You may be wondering when it will be the right time to tell them, how to tell them, and how much information to share. You know your children and grandchildren best, and there is no right or wrong way to talk to them. 

Usually, it’s helpful to talk to children sooner than later, as they may guess that something is wrong, and being honest can help to allay many of their fears and help them cope better. How much you tell them will depend on their age. 

You may like to ask your partner or another relative or friend to help you talk to children.