Healthy Living

Opening Up About A Parkinson’s Diagnosis

Opening Up About A Parkinson’s Diagnosis

Key Takeaways

  • The first and most important step that you’re going to have to do is accept the fact that you were diagnosed with Parkinson’s disease, and that it’s going to affect your life.
  • It is normal for anyone to feel scared and stressed out about telling their loved ones their Parkinson’s diagnosis.
  • Plan the right time to tell your loved ones about your diagnosis, and be sure to tell them in person with a script in mind.

Being diagnosed with Parkinson’s can be a huge life-changer for anyone. Unfortunately, it is a progressive disease, so even with the help of surgery and medication, some parts of it will remain as part of your life. It can be possible, especially during the early stages of the disease, to live life as usual and hide the condition from family and friends. However, later on, the tremors and other effects of the disease, such as stiffness in your muscle movements, can become very difficult to conceal.

There will be some point in time, where you have to tell the people that are very close to you or the people that you deal with every day about your condition. Telling your loved ones your Parkinson’s diagnosis can be very difficult, but it’s very important for everyone involved. This will not only help you get rid of the anxiety and stress of keeping your Parkinson’s a secret, but it will make the people around you understand what you are really going through and they can prepare themselves for whatever might happen later in the future. The side effects of Parkinson’s can be a challenge for the people diagnosed with it and the people surrounding them. However, the proper communication rooted in empathy and the right understanding of the disease can help heighten everyone’s quality of life.

When to Open Up

It is normal for anyone to feel scared and stressed out about telling your loved ones your Parkinson’s diagnosis. You become worried about how the people that you’re planning to disclose the information with are going to react. You become worried about how this is going to affect your relationships and your career. A lot of negative thoughts are going to run around in your head, and that’s okay. It’s okay to feel anxious and worry. You have to feel all of these emotions before you’re able to accept your reality.

The first and most important step that you’re going to have to do is accept the fact that you were diagnosed with Parkinson’s disease, and that it’s going to affect your life. Accepting and understanding what you’re going to go through will greatly help you when you finally communicate with others and make them understand better about Parkinson’s disease. Here is a simple summary that can help you prepare before disclosing your condition with other people:

  • Learn about the condition. Being curious and asking about your condition from your doctor can give you more knowledge and a better perspective about Parkinson’s, which will eventually help you understand it better and prepare yourself for the future.
  • Accept your condition. Start telling yourself that this is me. This is a part of me. I can’t change it, but I can fight through it. I’m going to live with it, but I won’t let it hold me back from being happy.
  • Find ways on how to cope with Parkinson’s. Now that you have enough knowledge about what Parkinson’s is, and you have accepted it as a part of your life, you’ll be able to overcome your worries and strive for a good life even after being diagnosed with it. You can now be comfortable with your own body again, and you’re now more open about telling your loved ones your Parkinson’s diagnosis. One way of coping up with Parkinson’s is to have a support group that will be there for you through every challenge brought by the disease.

How to Open Up

Although you have already accepted the fact that you are a person diagnosed with Parkinson’s disease, it is still inevitable that your loved ones will become emotional. They may take some time accepting it themselves when you finally break the news to them. There have been cases wherein the spouse is away when the doctor gives the diagnosis; thus, they are left with the burden of sharing the news themselves. It’s understandable that it can be very hard to tell the people we love that we have a life-term disease. Sometimes, it’s easier to tell a stranger about our problems than to the ones we love and care for the most. Mostly it’s because we are afraid of them getting hurt. However, hiding your condition from your spouse or children will only make the matter worse.  

Open communication is the key to a better life, especially when you’re diagnosed with a condition such as Parkinson’s disease. Here are a few steps that can help you open up about your condition with your loved ones or co-workers:

  • Plan the right time to tell them. You have to plan for the right moment. Sometimes, it’s a bad idea to talk to someone when they’re stressed out from work, angry due to a fight, or when they’re very upset about something. This type of moment can make a person difficult to talk to and susceptible to making unnecessary outbursts or comments. It’s better to tell them when they are calm and more reasonable. They’ll likely be able to handle the news better.
  • Tell them in person. You’ll be more in command of the situation when you’retelling your loved ones your Parkinson’s diagnosis in person. You’ll be able to answer their queries better and convey your thoughts and feelings clearly. Texting or chatting has its limitations, such as word count, and diminishes emotion. It can distort what you’re really trying to say and make words sound less sincere. The person on the other line may interpret the entire conversation differently and vice versa.
  • Plan out a script. You don’t really have to write it out down, but it’s best to prepare what you’re going to say. You should also take note of your audience. You don’t have to gather everyone in a room. You can tell them the news one at a time. You can tell your spouse first and explain your condition to your children or colleagues together. That way it wouldn’t feel so difficult or overwhelming, since you now have someone to explain it with. The way you break the news to everyone may also be different. It’s best to keep the conversation simple when you’re talking to children, while it’s the opposite when you’re talking to adults. You can read more about this here.

What’s the Next Step?

Now that you finally overcome your worry of telling your loved ones your Parkinson’s diagnosis, you’re going to feel more accepted by everybody. You can also now plan out other strategies with them that could help not just you, but everyone else to cope with your condition.

For people with Parkinson’s disease, here are a few ways to help you cope:

  • Plan out a schedule for your diet and keep track of medications
  • Engage in activities or hobbies you enjoy and are stress-free – jogging, yoga, fishing, etc.
  • Plan out frequent visits to the doctor
  • Get involved in advocacies or support groups for people living with Parkinson’s
  • Apply for therapy sessions – depression can be a side effect of Parkinson’s disease

For people who have a friend or a family member with Parkinson’s disease, here are few ways to help your loved one:

  • Be more understanding and patient
  • Learn more about your loved one’s diagnosis.
  • Have someone to talk to – you also need your own support when things get a bit overwhelming
  • Find time for yourself – avoid burnouts by going out with friends or enjoying your own hobbies

Living with Parkinson’s or with someone with the condition can be tough, but just like everything else in life, there’s always a silver lining. Some people diagnosed with the condition have actually said that because of Parkinson’s, they were finally able to spend more time with their family and enjoy the hobbies they love. You don’t have to be afraid of telling anyone about your diagnosis. You’re never alone. The warmth and acceptance that you’re going to feel once you become open about it can be surprisingly uplifting. Sometimes, the biggest problems in life drive us to make most out of the little things and look at life with new meaning.