The role and value of family and friends for those dealing with spasmodic dysphonia cannot be overstated. Their help and acceptance brings us comfort and strength, and, combined with their encouragement, embolden us to interact with the rest of the world. This source of patience and support often make the difference between living with an inconvenient disorder and existing with an alienating condition. In a 2006 NSDA survey, the "support of family and friends" ranked third when SD patients identified what helped them the most in coming to terms with their condition. Only the "availability of botulinum toxin injections" and "learning more about the condition" ranked higher.
Still, when it comes to living with SD or living with someone who has SD, frustration abounds. We patients are discouraged by the perceived insensitivities of others and feel the constant burden over our inability to speak effectively. Conversely, we can appreciate that friends and family may grow weary of what may seem like an overemphasis on the problem and our inability to "deal with it." They also may be frustrated at knowing how to help. The frustration about not being able to have a "normal" conversation without a second thought is something we and our family and friends share.
This section provides an insider’s view into the daily challenges we face and offers suggestions for how best to support and help us.
Imagine a world so filled with noise that it drowns out any sound you wish to make. All your attempts to draw attention to yourself become lost amidst the clatter and chatter of life including the music playing in restaurants, the din of conversations in the shopping mall, and the hiss of cappuccino machines at Starbucks. There is so much you'd like to say but it's nearly impossible to contribute to conversation and often, with a spasming voice, you are too embarrassed to try. You think twice about every conversation you might have and how you will explain what is wrong with your voice. Usually, it is just easier to remain silent.
This is the world in which we live. Everything seems to compete with our ability to make ourselves understood. When symptoms are at their worst, there is no such thing as an easy, casual conversation. People assume we are stressed, shy, scared, emotional, or all of these but the whispered or strangled voice still requires an explanation. If this were to happen only once or twice a month, we would not mind, when it happens on daily basis, it becomes tedious and discouraging.
However, SD does not define us, it is not our character. As with any relationship, love, acceptance, and communication are critical. We are thankful for friends and family who can help us in so many ways. Here are a few suggestions.
Educate yourself on spasmodic dysphonia
Research what the disorder is and what the treatments are. Read the materials available from the NSDA, including the book, Easier Done than Said: Living with a Broken Voice by Karen Adler Feeley. Attend a symposium, accompany us to a treatment session or go to a local SD support group meeting.
Accept that your role as friend/partner/family member may change
Your role in the relationship may change, but always remember what shouldn't change - mutual respect and equal partnerships. Talk to us in advance about how to handle social situations. Resist the temptation to jump in during conversations unless our symptoms are at their worst or we haven't been understood after a couple of attempts. By opening this up for discussion, it avoids creating resentment and helps to keep us from slipping into a pattern of over-reliance.
Recognize that you may have to go the extra mile to facilitate conversations. Be patient when we can't get the words outs or when you can't understand or hear us. Simple things like coming into the same room to have a conversation, turning down the TV, or turning off the faucet, will go along away. On really bad voice days, consider texting us rather than calling.
Keep communication open
Ironically, SD can improve communication with a spouse or partner. SD may not define us but it’s a big deal and a big part of our lives.It helps if we can talk with you about how it makes us feel and to know that you’re being honest when you share your side of it. These conversations are easier if there is an underlying bedrock of trust and acceptance from a friend and love from a spouse or partner. And we know that SD is a burden for you, too. Don’t bottle up your feelings, resentments, questions, and worries.
SD will always be there but that doesn’t mean we should dwell on it in our conversations. As you get to know our cycles of good and bad voices, don’t frequently comment on the better/worse quality of our voice. We know better than anyone (minute-by-minute in fact) whether our voice is better or worse and we may feel (albeit unfairly) that you’re too focused on the voice and not the person. And making note of a bad voice only increases our self-consciousness (if that’s possible) making the situation worse.
Do not allow to withdraw from life
For a person diagnosed with SD, it is not uncommon to feel depressed and frustrated. But instead of enabling your loved one to stay at home and not interact with others, help make modifications to social outings so that your loved one can feel comfortable (e.g. have dinner at a quiet restaurant or throw a dinner party at home, make sure your loved one can voice him/herself in a group, educate people in advance about SD).
The shame and frustration that many of us feel with our voices often causes us to isolate ourselves. There is a tendency for many of us to stay at home to minimize the awkwardness and to avoid answering the inevitable, uncomfortable question, “What’s wrong with your voice?” While isolation may seem like the easiest solution, it’s actually the worst thing we can do. We need to maintain our confidence in social situations. Just as important, we need confirmation that others are still interested in us and we can contribute. Because we are less likely to feel bold enough to do this on our own, family, and especially friends, can make a world of difference.
You can help us by pushing us if we’re avoiding too many situations. If we drift too far into self-pity, remind us that people function every day with worse (even fatal) conditions, Everybody needs a little “tough love” sometime!
Remember, SD is a new part of your life, and it can be a challenge, but not one that should change who you are, who your loved one is, or the meaning and value of your relationship.