Accepting your new voice as part of the healing process

As with any major loss, you may feel many emotions…anger, frustration, depression, embarrassment, questioning of your self-identity, wondering why me, even retreating into yourself. We know that the most confident people we know with SD are also the same people who have gotten themselves to a place of acceptance. 

Six Stages of Acceptance

In the book, Easier Done than Said: Living with a Broken Voice”, author Karen Adler Feeley talks about “Five Stages of Grief” as defined by noted psychiatrist Elisabeth Kubler-Ross. and suggests a modified version entitled “Six Stages of Acceptance.” This model is designed to help us better understand what we are feeling is normal, and it can give family and friends a better understanding of the emotion strain of losing one’s voice. By changing the title from “stages of grief” to “stages of acceptance,” we shift the focus from sorrow to inner peace that enables us to move toward a more happy and productive state. 

 

These stages are not neat and orderly

It is important to note that these stages are not neat and orderly. It can be a messy process and there is no specific timeline. This could take a few months for one person and many years for another. You could get all the way to acceptance, have a bad voice day and find yourself frustrated again. You may not even go through every stage or in the same order. Symptoms, circumstances, and personality can all impact the path you take. And each person may handle each stage differently in a way that works best for him/her. While acceptance is the goal, it is the process that helps you regain your confidence and accept yourself as the beautiful person you are. Remember, there is no one way or right way to move through this process.

The Six Stages of Acceptance Model

Unlike those who suffer from a traditional, one-time loss, we with SD have plenty of time to recognize that something is wrong with our voice. This will eventually prompt you to start looking for a diagnosis.  However, this is the worst of the stages because the unknown voice disorder may wreak emotional havoc.

“It was difficult to be a teenager who had been very articulate to suddenly have a choppy voice that sounded so strange. I kept quiet except when around people I knew very well. In school, everyone had to give oral reports in front of the class and I struggled through them.  I never volunteered to answer questions and sat in fear I might be called on.  It was so embarrassing to struggle through a response even though I knew the answer very well”  – Anna

Before you get a diagnosis and have a clear medical explanation for what is going on with your voice it is easy to think that maybe the problem is emotional or psychological. And while the NSDA has made progress in reducing the time between symptom onset and diagnosis by a doctor, there is still a time gap and a progression from a lack of answers to a decrease in self-esteem to depression.

“I became depressed and withdrawn from social situations at work and at home. I quit making phone calls, quit ordering in restaurants, and quit using the drive-thru…I withdrew from chatting with people at work and at family get-togethers.  I didn’t answer the phone or go shopping anymore.”  – Gail

Seek out a proper diagnosis

Getting a proper diagnosis is critical to moving past this stage. Look for an otolaryngologist who specializes in voice disorders and a neurologist who specializes in movement disorders. The NSDA offers a healthcare referral list by state to guide you to a resource. 

Deal with the possible by-products

Recognize that depression can be by-product of this disorder, not a reflection of your character.  Do not let it win and take over your life.  Push yourself to socialize, even if it is just with a small circle of family and friends. Go to the gym and take a class. Volunteer to deliver meals to seniors are great for one-on-one conversations. Do things you enjoy. 

The less you talk, the more uncomfortable you may be with your voice.  The more you withdraw, the more you may dwell on the problem. You can quickly create a cycle that just keeps you in this place.  Talk to your significant other and ask them to go with you.  Laugh often.  If you can keep this in the proper perspective, you can minimize the emotional impact it will have on you.

If socializing seems too difficult, consider the following:

  • Join a support group, no one understands you better than someone who went through this same thing.
  • Join an online support group (check out the NSDA’s online bulletin board (www.dysphonia-bb.org).
  • Join a Facebook group.
Just keep connecting with others! 

In this stage, you finally know what’s going on with your voice and know that it’s not all in your head. The problem with your voice has a name. You can go on the internet to read about it. 

You may feel empowered for the first time since your symptoms started.  For some, there is an initial euphoria that comes with knowing.  There is relief.  You may find yourself very chatty and  be in good spirits and ready to talk.  

But for some, a diagnosis and learning about the long road ahead can be very challenging. It may bring more confusion, along with some fear and anger about lack of treatment options, the frustration of a chronic lifetime disorder without a known cause or cure.  

Either way, remind yourself of these important points:

  • You did not do this to yourself.
  • This is not a psychological or emotional problem.
  • This is a medical condition caused by faulty signals coming from your brain (as is the case for someone with SD)
  • This is not fatal.
  • There are some treatment options available to alleviate the symptoms
And work on moving forward know that you know what is wrong. 

The news of a diagnosis may lead to the frantic search for information.  What is the condition, causes, treatments etc.  It may not be as encouraging as you hoped. It could even cause even more frustration or disappointment and sadness. 

At this point you may be unwilling to accept it, but this is the time that you need support to get through this.  The most powerful message you will get during this stage is that you are not alone! It is critical to get support from a group of people who know exactly what you’re going through, others with SD or your voice condition.  

We recommend a support group, the NSDA Bulletin Board or a Facebook group. The NSDA can even put you in contact via email or phone with someone you can talk to personally.   You can even include your loved ones with you so you don’t feel alone. 

It is also important to get out, be active, and do the things you love so that you can put your anger and sadness on pause for a while.  The more pauses you have, the shorter the time between bouts of anger and sadness, until hopefully, there is no more. 

Here is advice from others with SD who have experienced this stage of anger and sadness:

  • Try to keep it in perspective because it could be much worse.  You do not have a fatal disease, you have all your cognitive abilities and it is not physically debilitating.
  • Turn towards your faith or belief system to find insights and strength.
  • Focus not on what’s been lost, but what you have gained.  New friends in your support group, new listening skills that gave you a better understanding of people, a new sense of empathy for others, or a new career path you might have never tried. 
  • Give it time.  After awhile, the ‘why’ will no longer matter and you will accept that this is your voice.

Fear and shame may play a larger role in your reaction to SD than to a sudden loss.  With SD, or any voice condition, the loss of your voice carries with it a fear that others might think less of you, that you are somehow different, or that your job is not secure. Because this is a chronic condition, the fear and shame that you might feel can reoccurs, to some extent, every time you try to talk. This is a very long-lasting stage for most people.

In addition, most of us in this stage may choose not to talk about it because we are afraid of how others will react.  However, talking about it may just what you need to do.  Until you can tell others about your condition, you may not get to the point of true acceptance.  

Think about this scenario, you have a shaky SD voice and you’re getting your annual performance assessment at work.  You might find you get a lower evaluation because you are perceived to be nervous all the time. But telling the boss that you have a voice disorder takes this component out of the equation and you may be graded on your actual performance and not on your voice quality.  

You may find that when you disclose your condition to others, that things get better for you.  Most people will lean in and listen more, some will ask questions. You’ll may also find that some of the things you hate the most, like others not listening or being talked over, are minimized because they now know that you need extra time and a quality ear.  Hopefully reactions will be encouraging and may help remove the fear you have been living with. Sharing with others what helps and what makes you feel worse may make things easier. If they don’t know, you might find them doing something that makes you upset when they just mean to help.

Sharing can be very situation-specific and not necessarily right or appropriate in all settings. Some people may not understand and still judge you, but remember it takes a lot of courage to be open about your voice. This stage can reoccur often throughout your life as you try to navigate new situations and deal with new people,

Acceptance comes slowly and over time. Little by little you will find yourself able to talk about your SD without slipping into negative emotions. You’ll hear the break in your voices and understand why it’s happening and go on talking anyway. Enjoy your good moods and that normal life you have.  Recognize that you can slip back into the anger or sadness stages periodically, but the key is to recognize what is happening and to spend as little time there as possible. Maybe at first there is no balance and you’re angry or sad more than content and accepting. But every time you break that thought pattern and  feel that renewed sense of energy and good mood, you’ll want it again. So the sadness lasts less each time and the happiness lasts longer each time until BAM, you’ve accepted your voice disorder.

The best part about accepting the fact that you have SD may be the freedom and relief it provides. When you accept it, you stop worrying about how other perceive you and your self-confidence will grow.  Remember, your life is about more then SD.  It’s a wonderful feeling.  When you feel this way, do things you love, have fun and enjoy yourself.

If you find yourself moving back into a previous stage, maybe go to a support group, do things that will take your mind off your voice like taking a class, learning a new skill, hiking a harder trail. Redirecting the emotions you are having into something productive may be helpful.

Read this article on being happy by Dorothy Tanahill-Moran

When we have reached a point where our confidence in ourselves and our frustration about the current state of SD research (or any topic you are passionate about) enables you to go beyond helping yourself to helping others, you have gone beyond acceptance to what we call super-acceptance or advocacy.  We would like you to advocate for others with SD, but whatever it is that causes you to speak up and use your voice is just as important.  When you can ignore your physical voice and pursue public policy  and influence outcomes that directly affect people’s live you have accepted the voice you have and have turned it into an instrument of change.

But as far as the NSDA Community goes, tell your story, encourage others, sponsor awareness campaigns, or speak to a classroom of future SLPs.  Your voice is so powerful!

We have created a tool for the loved ones of someone going through these six stages.  You can download the article on Caring for a Loved-One here.

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