Processing a new diagnosis
A diagnosis of IBM can be a huge shock for yourself, family members and friends. It is normal to feel an overwhelming mix of grief, confusion, anxiety, loneliness and helplessness as your life has been forever changed. Everyone will have different ways of getting through this time but it’s important to know that help and support are available for you and your loved ones. Hear advice on processing your diagnosis from a community member with shared experience.
Getting help processing a new diagnosis
There are a number of ways you can seek support as you process a new diagnosis:
- A psychologist is a university-qualified health professional who can help you talk about your thoughts and feelings to understand and cope with the challenges you and your family are facing.
- A counsellor is a trained professional who can help you talk about and work through problems.
- A social worker can provide information and support to people experiencing a range of issues including family problems, anxiety, depression, crisis and trauma.
- A genetic counsellor can help you understand how DM is inherited and whether there are any implications for other members of your family. Your specialist will be able to advise whether a genetic counsellor is required.
- Your state or territory neuromuscular organisation can provide support, advice and information about living with IBM.
- Your GP can talk to you about a mental health plan and how you can use this to help you access the support and services you need.
- Other people and families living with IBM have also experienced the emotional rollercoaster that comes with a diagnosis of IBM and are able to understand exactly how you’re feeling. You are not alone. Connect with other people and families living with IBM in The Loop Community.
How to talk to others about your diagnosis
Having a conversation with a loved one about a diagnosis of IBM is not easy. In fact, it will probably be one of the hardest conversations you will have. But, like all difficult conversations, it is important and necessary.
There are many reasons why people may not want to have this conversation, mostly centred on wanting to protect their loved ones and themselves.
But avoiding the topic is not helpful. People may have noticed differences and changes that have occurred and/or heard the condition being discussed.
So it is crucial that you have a role in your loved one learning about your diagnosis. This will enable you to support them as they process the information and to be on hand to answer any questions they may have. If you are the person with IBM it will provide you with support and someone to talk to. Together, you can learn about the journey ahead.
It will also allow you to:
- Provide answers to questions.
- Correct any misinformation they may have heard or read.
- Show them that you have faith in their ability to handle difficult conversations.
There is no right time to start this conversation. Research suggests the earlier you talk to your loved ones about your/their condition, the more natural the conversation will become. The important part is to pick a time and commit to it.
Some important dos and don’ts:
- Do be positive but also realistic.
- Do tell them you will do many wonderful things in your life – you may just do them differently.
- Do tell the truth. Answer all their questions.
- Do consider your language. Try to avoid negative or emotive words, such as ‘suffering from a condition’.
- Do use daily living examples that they can relate to.
- Don’t avoid answering questions and don’t shut the conversation down.
If you are having difficulty starting the conversation, try asking a couple of questions such as ‘Do you know why I have been having difficulty with my muscles?’ or ‘Do you know why I have been tripping lately?’
Remember, it’s okay to be upset during the conversation but try to avoid breaking down as this will only cause greater distress. And if speaking with a child, remember children are resilient and they generally handle information of this nature far better than adults.
Understanding IBM and how it’s diagnosed
What causes IBM?
The exact cause of IBM is unclear. For unknown reasons, the body’s immune system turns against its own muscles which damages the muscle tissues.
In IBM muscle damage is caused by:
- Inflammation – inflammatory cells invade the muscles and gather between the muscle fibres.
- Degeneration – muscle cells breakdown.
It is unclear what causes the inflammation and muscle degeneration, and how these two processes interact with each other.
People with IBM are more likely to also have other medical conditions such as lupus, Sjӧgren’s syndrome, scleroderma, sarcoidosis, thyroid dysfunction, high blood pressure and diabetes.
How is IBM diagnosed?
IBM is a rare condition and is thought to be underdiagnosed or often misdiagnosed. Getting the correct diagnosis can be a long and frustrating process. Tests can help diagnosis, including:
- Blood tests – to measure creatine kinase (CK) levels in the blood. Creatine kinase often leaks from damaged muscle cells into the blood. High levels of CK in the blood can suggest a muscle problem but does not specifically diagnose IBM.
- Electromyography (EMG) – this test measures the electrical activity of the muscles and the nerves controlling the muscles. In IBM, abnormal electrical impulses may be detected. This can show that a muscle wasting condition is likely but doesn’t specifically diagnose IBM.
- Muscle biopsy – this is the most definitive test for IBM. A muscle biopsy involves taking a small sample of muscle and examining it under a microscope. IBM is diagnosed if muscle cells contain inclusion bodies (abnormal clumps of proteins seen in damaged muscle cells). Biopsy results may initially give an inconclusive result and sometimes a second muscle biopsy is required.
The genetics of IBM
IBM is not a genetically inherited condition, meaning it is not passed down from parents to their children. There is a rare form of IBM, called inclusion body myopathy, which can be inherited. Inflammation is not common in this rare type of IBM and you can find out more about how it is inherited from the Muscular Dystrophy Association (US) website.
IBM is a slowly progressive muscle-wasting condition.
Most people will still be able to walk although may require some sort of mobility device at times. After having the condition for more than 10 to 15 years, many people will find they need assistance with daily tasks and some people may use a wheelchair most of the time.
IBM does not seem to affect a person’s life span. People who have difficulty swallowing are at risk of serious complications, such as aspirational pneumonia (lung infection caused by inhaling food into the lungs).