Mental health and Usher syndrome

It’s normal to feel a range of emotions when you are diagnosed with a serious medical condition. We understand, and can support you with your Usher syndrome diagnosis.

Being diagnosed with Usher could come as a total shock or be confirmation of something you had suspected.

You may feel numb or confused, and you may have trouble listening to, understanding, or remembering what people tell you at the time.

Your family and friends will also have their own feelings to deal with, which may add to your concerns.

Talking to someone who has received the same diagnosis can help you to deal with any new emotions you are feeling.

Immediately after your diagnosis

After you are diagnosed, you may feel a range of emotions, including shock, disbelief, fear, anxiety, guilt, anger and more. No two people will have the same reaction, and there is no right or wrong way to feel.

Acceptance and adjustment

It’s hard to be positive when your future seems uncertain. Feeling negative is normal, but if these feelings are constant and all consuming it may be best to seek professional support.

Accepting the diagnosis and figuring out what it means for you is difficult, both practically and emotionally. You will need to focus on the present and plan for the future.

Some points that might help with this are:

  • Think about what you can do rather than what you can no longer do.
  • See obstacles as challenges that need a solution.
  • Talk to other people with Usher syndrome about how they have overcome barriers.
  • Check that you are getting the right financial benefits.
  • Ask for help from professionals with experience of Usher syndrome.

Maintaining your mental health

In the future, you may experience further changes in sight and hearing that affect your communication, mobility and how you access information. These changes can be challenging, as you have to make further adjustments to your life.

With my deterioration in vision, I feel like I have just been diagnosed all over again. The feelings are the same. I can’t do now what I could a month or two ago.

Person with Usher

You may feel like withdrawing from others, but isolation can make things worse. If you’ve retreated from relationships that were once important to you, make the effort to reconnect.

Support from family, friends or professionals can help you to remain positive and move forward.

Sharing your experiences with others

It can be helpful to share stories, achievements, ideas, experiences and strategies for coping with other people who have Usher.

A problem you’re experiencing has probably been faced and solved before, and solutions you’ve found could be helpful to others.

Accepting help or support could be viewed as becoming dependent on others, but it could also be viewed as a way of regaining choice, control and independence.

For some people, raising awareness of Usher is a way of changing the helplessness they feel.

Maintaining good physical health

A healthy body will make it easier to cope with stress and changes to your condition.

It helps to have a good routine of sleeping, eating and relaxing. Exercise if you can, as it helps to improve sleep and boosts serotonin, endorphins, and other feel-good brain chemicals.

Information for professionals

When difficult information is given to patients and their families, the way that the news is delivered has an impact on how they respond.

This is true when a diagnosis of Usher syndrome is given. Based on what people have told us, good practice in communicating the diagnosis should include:

  • Preparing the person for a possible diagnosis of Usher
  • Having a choice about who is present to hear the diagnosis
  • Giving the patient as much information about Usher syndrome as they need
  • Providing clear, accessible information to take away on the day
  • Giving the person the opportunity and time to ask questions and talk about their feelings
  • Reassurance and information about how to get support.

A study by Gavin Dean et al. explores the relationship between wellbeing and quality of life of people with Usher syndrome.

Get in touch

Get in touch for information and advice about Usher syndrome

Contact us