Emotional Challenges
How You Feel
Family and friends will no doubt be struggling to support you through the emotional roller coaster of living with a neuromuscular disorder. The many life adjustments that become necessary can lead to sadness and loss, guilt and frustration, and even fear and resentment. All of these can be mixed in with feelings of hope and optimism, and a strong, fighting spirit.
Sharing your feelings with someone you trust will help you organize your thoughts. Research tells us that getting the best out of living with a neuromuscular disorder relies on being open about your feelings and not allowing guilt and resentment to build up.
Depression is a natural reaction and it is quite normal to feel low at times. Even so, it is important to be aware of signs such as:
- Loss of interest
- Loss of appetite
- Lack of energy.
If any of these persist for any length of time or become overwhelming, talk to your doctor- they may be normal but that doesn’t mean you have to go through them without help.
How Other People Feel
Neuromuscular disorders affect the whole family. Normal routines and lifestyles can be turned upside down and lead to significant emotional changes for everyone. Some may take on tasks that were traditionally yours. Careers may have to be put on hold and resulting money worries may increase. Many will try to hide their own feelings of loss and helplessness to protect you.
Discussing and acknowledging feelings within the family is vital. Sharing the highs and the lows with your family and close friends, and allowing them to do the same, will mean that you can help each other.
As a neuromuscular disorder progresses, the nature of your usual relationships may shift. Whether you live in a family unit or within a friendship network, hold on to what was unique about those relationships before you had a neuromuscular disorder. Accept outside help for some of your physical care. Above all, try to recognize when those you love need to share their feelings and be prepared to encourage it.
