Mental Health issues and Usher Syndrome

Emotional responses of patients receiving a diagnosis

When difficult information is given to patients and their families, the way that the news is delivered has an impact on how the recipient responds to what they hear. This is true when a diagnosis of Usher Syndrome is given.  An insensitive approach will increase the distress of the person with Usher, and may have a lasting impact on the way they perceive themselves, their ability to adapt and their future prospects.

“He (the consultant) said, "Yeah, you've got a touch of Retinitis, you probably never will be able to see in the dark but yeah, that's fine, I shouldn't worry about it.” So I went away and I read up about it. 'Retinitis Pigmentosa' No, no that isn't what I've got, so it was kind of just put to one side so we never really took it on board, the implications of it.”

Based on the experience that individuals have described, good practice in communicating the diagnosis should include:

  • Preparing the person for a possible diagnosis of Usher
  • Having a choice about who should be present to hear the diagnosis
  • Giving the patient as much information about Usher Syndrome as they need at that time
  • Providing accessible clear 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

Having the diagnosis of Usher could be a confirmation of what you had suspected, or simply relief that you have a diagnosis when you were aware that something was wrong. Alternatively the diagnosis could come as a total shock.

“I remember the day when I came out of the hospital. I just couldn't believe it. I just couldn't believe it. It was a relief in a way because I knew there was something not right about me. They kept saying to me, "You're fine, you're fine." So I thought I was going nuts in my head because I was thinking, "Well why am I walking into these things?"

At the time of the diagnosis you may feel numb or confused. You may have trouble listening to, understanding, or remembering what people tell you during this time. It’s not uncommon for people to shut down mentally. Talking to someone else who has had the same diagnosis of Usher Syndrome can really help to deal with any new emotions you are feeling.

A diagnosis affects not only you, but it could also have an impact on other family members. Parents, siblings, children will all have their own feelings to deal with, which may complicate matters for the person with Usher Syndrome and add to their concerns.

“I remember ringing her up and I said, "Mum, did you keep it from me?"  She said, "No, I did not. You were just born deaf, that was it. She couldn't get her head round the fact that mum and dad were carriers and even the consultant asked me if they were related in any way and I said "No." It was just bad luck really, pure bad luck. My mum took the blame on herself. Yeah, it was hard. I'll never forget that day.”

After the diagnosis

After you are diagnosed with Usher Syndrome, you may feel a range of emotions such as shock, disbelief, fear, guilt, sadness, anger, and more. Each person may have some or all of these feelings, and each will handle them in a different way.

  • You might feel anger.  It’s normal for people to wonder why it has happened to them or to think life has treated them unfairly
  • You might feel anxious about what the future will be like and how you will cope
  • You might be sad and feel that you won’t be able to achieve your goals in life
  • You might feel guilty about becoming a burden to others or that you might have passed this on to your children

Acceptance and adjustment

It’s hard to be positive about an uncertain future. These negative feelings are a normal response, but if they become constant and all-consuming, it may be best to seek professional help and support. Accepting the diagnosis and figuring out what it will mean in your life is challenging. It can be difficult both practically and emotionally. It will take time to adjust and develop new strategies to cope with losses and changes as they occur. You will need to focus on how you can change things so that you can carry on with your life, plan for the future and achieve your goals. Some important points that might help with this process are:

  • Think about what you can do rather than focus on 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 have the right financial benefits in place
  • Ask for help from professionals who have experience in supporting people with Usher Syndrome.

Maintaining good mental health with Usher

In the future you might experience further changes in sight and hearing which may have an impact on your communication, access to information and mobility. These changes can be challenging, tiring and demoralising as you have to make further adjustments to cope and manage 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.”

You may feel like withdrawing from others, but isolation makes things worse. If you’ve retreated from relationships that were once important to you, make the effort to reconnect. You might need to have honest and straightforward conversations about how your sight and hearing have changed and the impact it’s having on you.

No other person can experience what you are experiencing, but they need to know and understand. It works both ways. Having good support at these times, can help you to remain positive and move forward once more.  Using support from family, friends or professionals is useful to address any worries or concerns, rather than allowing them to build and become overwhelming.

Sharing your experiences with others

People with Usher, and their families and friends, often find it helpful to share stories, successes and achievements, ideas and experiences and strategies for coping especially when newly diagnosed or at times of change.  Sometimes people meet up face to face but we know that people with Usher are living far and wide and get in touch with each other in other ways.

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.

There is value in sharing problems and solutions. A problem you may face has probably been faced and solved before, and solutions you have found could be the answer someone is looking for. There is strength in unity, and hearing how others cope can help inspire you.

Some people are able to face the challenge of what has happened by turning it round, and offering to support others who are going through the same thing (see information on peer mentoring). For some people, supporting others or becoming involved in raising awareness of Usher is a way of changing the helplessness they may feel, and it reclaims their sense of power. People with Usher, and their families and friends, often find it helpful to share stories, successes and achievements, ideas and experiences and strategies for coping especially when newly diagnosed or at times of change. Read about connecting with others via the internet and social media.

Maintaining good physical health

A healthy body will make it easier to cope with stress. It helps to have a good routine of waking, sleeping, eating and relaxing. Exercise if you can, as it helps to improve sleep. Regular exercise boosts Serotonin, Endorphins, and other feel-good brain chemicals. If you have a job ahead of you it may help to break it down into smaller manageable tasks. Be patient with yourself as it takes time to adjust, and perseverance to achieve. Celebrate your successes no matter how small, and see failures as learning opportunities. Usher doesn’t need to define who you are, that is your job.

Counselling

With the changes that you experience you may have good days and bad days. The challenges might seem overwhelming, leaving you feeling that you cannot cope with what is happening to you.  Counselling may be an option for you to consider.

First published: Wednesday 23 November 2016
Updated: Monday 16 January 2017