Inclusion Body Myositis – Emotional Wellbeing

The Psychological Challenge of IBM

The diagnosis of inclusion body myositis can be emotionally devastating. IBM is a rare, unknown disease, with no medical treatment, often leading to severe disability, so the news can be hard to handle. If you’ve been diagnosed with IBM, you may grieve for the loss of the future life you had planned for yourself. Depression and anxiety are common. You may feel all alone, with nowhere to turn for information and support. Your family and friends have never heard of it, and most of your doctors know nothing about it. And once you have finally adjusted to the situation, you gradually lose more of your physical abilities, one after the other, in a seemingly never-ending series of losses.

Seeking Professional Help

Don’t be afraid to ask for help. If you are depressed and anxious, consider seeing a mental health professional, such as a psychologist or psychiatrist. Deciding to see a mental health specialist is not a sign of weakness, it is a sign of strength. Your goal is to regain your emotional health. Medical specialists can help.

Talking

Talk about your condition with others, when you are ready. Don’t suffer alone. Talking can indeed be therapeutic. Sharing your concerns and fears can lighten your load. Your loved ones care about you and want to understand.

Support Groups

Support groups are very helpful for many people, since you can share your concerns and receive advice from others who understand your situation. Many people with inclusion body myositis are happy and fulfilled; you can learn from their experiences. You can also learn about practical tips and gadgets to make your life easier. The Facebook inclusion body myositis support group sponsored by Myositis Support and Understanding is excellent. The Myositis Association has regional in-person KIT “Keep-in-Touch” groups. See the links page for more information.

Meditation

When you are filled with worry, unable to concentrate, and distracted in your everyday life, it helps to calm your mind. Meditation can be healing. If the word “meditation” makes you think of hippies, incense, and chanting, keep reading. Meditation is simply a practice of training the mind to be calm and aware. You can meditate in a park, on the bus, or in your doctor’s waiting room. You don’t have to go to a meditation center or on a retreat. In fact, you can start learning to meditate right in your own home with smartphone apps such as “Headspace” or “Calm”. You also might consider signing up for Mindfulness-Based Stress Reduction classes, which are offered throughout the world, and are designed to address a variety of health problems using mindful meditation and yoga.

Activities Improve Quality of Life

Try to find at least one small thing to enjoy each day. Concentrate on what you can still do, rather than on what you have lost. Find new hobbies, make new friends. Be adaptable. Many find satisfaction and purpose in life from helping others. Have hope for the future, and know that you can still be happy in spite of this disease.

by Kevin Dooley, MD

Revised April 11, 2018