FACT SHEET Telling people you have Parkinson’s You have recently been diagnosed with Parkinson’s. How do you tell your friends and family? It is not an easy task. Not only do you have to deal with the new emotions you are feeling, but you also have to cope with the reactions of the people you are telling. This can result in added stress, which can increase your own fears and anxiety.
Do you have to tell everyone? Many people feel the need to announce their ‘situation’ or ‘news’ to everyone around them when they are first diagnosed. While feeling that everyone should know is a normal response, it’s not always best. Some people may want to hide the news from everyone. This is also a normal reaction but adjusting to the news is something that is ultimately best done with the support of others. You may find that it is best to only tell those who you know will offer positive support, such as immediate family and very close friends. Friendships can sometimes be difficult enough to maintain when you are healthy and in good spirits. But it is even more difficult when you do not feel 100% - when you are tired or stressed, your mood is down, or you are have anxieties about your condition, your future and that of your family. It’s important to remember you have control. While you can’t control how people react to your Parkinson’s, you can control when and how you tell them. You can choose to be proactive and positive in your approach to others. While it may be hard, actually saying “I have Parkinson’s” can be a good thing. Saying it aloud may release emotions that you may have been suppressing. Telling someone makes the condition more real; it is validating. Although it may be difficult, it is very therapeutic, because you are admitting you are living with an illness. This is the first step in coping. Don’t apologise for your disorder. It’s not your fault. It happened, and now all of those around you need to come to terms with it. If certain people have difficulty accepting it, remind yourself that this is their issue for them to contend with, not yours. Stress that while things may have changed, fundamentally you are the same person you always have been and don’t require special pitying voices or deep, meaningful looks and embraces. Your essence is the same. You are not defined by your diagnosis – it is simply a part of your life that you are adjusting to living with. Let your friends know that what you need is empathy not sympathy. What you need is someone who can put themselves in your place and see what your needs are. Often, you may simply need someone to listen to you, not someone to go around fixing anything. What you
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don’t need is someone who is just going to add to your burden of gloom. For some people, crying together may be a very bonding and supportive activity, enabling a person to feel less lonely in their grief and shock and sorrow; but for others, dealing with other people’s tears may be burdensome and one of the last things they feel like doing. Of course some people may react, at least initially, with grief, anger and disappointment. Accept that. These reactive stages, however, should not go on indefinitely. Adults should have the grace not to burden you with unnecessary outbursts of anger or denial. Being surrounded by people whose anxieties and fears are obvious and excessive will not allow you to cope in a healthful manner. Parkinson’s is now a fact of your life and it must be accepted. How you are coping is more important, not how they are dealing with your condition. Talk. It is amazing how effective talking can be. Sharing feelings and fears can resolve a million problems. Sharing your feelings with one another will defuse any resentment that tends to build in reaction to any pain and stress you both feel. People may automatically think the worst. You can help them understand by educating them about your condition. Parkinson’s New Zealand has leaflets about the condition which you may want to give them to read. The more at ease and knowledgeable they are, the more effective support they can give to you. They need to learn that you are still you and that the relationship can still go on. Give your friends clear facts about Parkinson’s. Tell them that you want them to help you maintain your independence for as long as possible, which will likely mean many years after you received the diagnosis. Tell them that as time passes you will likely face greater challenges from the condition but that you wish to maintain the relationship. In short, people around you need to come to terms with your Parkinson’s and its implications for the relationship. Once they do so, the relationship will grow and may even nourish both of you just as it always had done.
Workplace disclosure or non-disclosure - that is the question Parkinson’s is different for each person and it may never progress to the point where you have to consider giving up work prematurely. However, this may become reality for some. For employees in this situation who need to work or want to work, the question of how best to hang on as long as possible is critical. Don’t be in a rush to make major decisions. Many of us identify closely with our jobs and careers and giving them up can be painful. Besides concerns about one’s status and identity, deciding to leave work involves
The Parkinsonian
March 2012