From friends to support groups, talking or staying quiet, find the support that’s right for you
Wondering who to open up to?Whether you’re someone who has a huge network of good friends or if your social circle is much smaller and more intimate, it might become difficult to decide whom to speak with about your disease. So what to do?
- Start by considering how much you want to talk about what you are going through. If you were to tell everyone, would it give you the freedom to talk openly about it, or would it become a burden if people continually ask for updates?
- Make a list of all the people you would feel comfortable talking to.
- Now consider how involved these individuals are in your life. Think about how often you speak to them and take their personalities into consideration. Is this someone you can count on to be empathetic, tactful and discreet? Will they remember to ask how you are feeling but also know when to keep quiet?
- Make a list and try to stick with it. If you know who you want to tell from the beginning, then you won’t have to make a quick decision the next time that you see a friend.
Talking it out (or not)There could be dozens of reasons that you do not want to talk about your disease. For many, embarrassment, denial and a feeling of vulnerability makes the topic uncomfortable. You may also be a private person by nature and find it stressful to talk about feelings. Whether you are an introvert or an extrovert, you probably don’t want the topic of your condition to take over every conversation. So when you are deciding who to open up to, or whether to open up at all, be sure to have realistic expectations of the people around you, and to always put yourself and your emotional needs first.
Consider joining a support groupYou may have a fantastic support system, but still prefer opening up in a consequence-free environment, or hearing from other people in similar situations. Whether a support group sounds like a good use of time, or even if it sounds a bit fluffy, the experience might surprise you.
Here are a few ways that a support group might help:
- It may be hard for your family and friends to understand what you’re going through. A support group offers a place to talk with others who understand.
- You can learn from people in later disease stages and help those with less experience than you.
- A support group gives you the freedom to complain about taboo topics – or the people you love the most. (Sometimes you may need to vent.)
- You may be concerned that your deepest fears could upset your loved ones. A support group offers you the freedom to be completely open without worrying about the consequences.
- Scheduling time to talk about your condition might help you get it off your mind the rest of the week.
Social mediaIf you are looking to get more involved with patient organisations or help others become more informed, then social media is one option. You can start by following the official World Day social profiles, so that every year you will automatically see updates and news on the day.
Keeping it anonymous
Additionally, there are many credible sources online, including forums for asking and answering questions. Below you can find links to some of these: