Hello All
This month in our ‘Health in Focus’ posts, we’re looking at some of the different kinds of support available if you or a loved one are affected by ovarian cancer. We’ll explore how you can access them and some points to consider when thinking about what would suit you and be helpful. In this post, we’ll look at online support, and in future posts we’ll also talk about counselling and helplines.
Online support takes various forms, for example online forums such as this My Ovacome forum hosted by healthunlocked.com and social media such as Facebook or WhatsApp groups. They may be specific to ovarian cancer or open to people affected by gynaecological cancers or all types of cancer. Some online support is hosted by a charity or organised by someone affected to help others to support each other.
Online support can be valuable, particularly for people affected by a less common cancer such as ovarian, who may not otherwise meet anyone with the same diagnosis. Some online support platforms are open to people from all over the world. This means that they have the potential to offer support 24 hours a day because of people posting and replying from different time zones. Online support also allows you to take time to think about and draft what you would like to say before you post anything.
These platforms can enable groups to have a very specific focus such as rarer diagnoses or types of treatments, because larger numbers of people can access an online platform than an in-person group. For example, there are Facebook groups focused on low grade ovarian cancer, and on PARP inhibitors. Sharing what is happening for you with other people who understand from their own experience can help you to feel less isolated.
Depending on which platform you use, online support can offer the additional reassurance of anonymity. HealthUnlocked, which hosts the My Ovacome forum, allows users to set up an anonymous profile. If you’re uncomfortable sharing information about your health, thoughts and feelings, you may feel more able to discuss what’s happening for you with people who don’t know who you are. As with any support group, members can exchange messages privately and stay in touch outside the group to offer individual support and friendship. You can find out more about privacy on HealthUnlocked by searching Controlling your privacy on HealthUnlocked in the HealthUnlocked Help Center at the bottom of the page.
Although, on the face of it, users of online support platforms don’t ‘know’ each other through meeting face to face, as you’ll know from using My Ovacome, members become part of a caring community. It’s important to bear this in mind when thinking about what to post. For example, if when you’re going through a difficult time with your physical or mental health, you may find it can be helpful to post about what’s happening and how you’re feeling. Other members of the community may worry about how you are, so it’s a good idea to post an update if you feel able to so people know how you’re getting on afterwards.
If the platform you’re using doesn’t allow anonymity, for example Facebook, you can check your privacy settings and, if you’re joining a group, check whether the group itself is a private group where posts are only visible to other members. You can find out more about privacy settings in the Facebook Help Centre section on Basic Privacy Settings & Tools.
The idea of posting online about your experiences for the first time can be daunting, especially if you’re not familiar with the platform. If you’re unsure how the group works or whether it’s private or anonymous, you can contact the organiser to find out more. Especially when you’re new to the platform, you may find that it’s helpful just to see other members’ conversations. Some people join an online community and don’t post very often or at all. If there’s a particular topic that you want to know more about, for example tips on managing a side effect or members’ experience of a drug, you may find what you need by searching previous conversations without asking the community directly.
To do this, you click on the word ‘Posts’ underneath the picture at the top of the page. You will see a box on the right hand side which says ‘Search posts on My Ovacome.’ You can type in the box what you would like to see posts about, e.g. ‘Avastin’ or ‘lymphoedema’ and click on the magnifying glass or press return. Posts that mention the topic will be shown. If you would like to search for posts from other forums as well, you can use the ‘Search HealthUnlocked’ box at the very top right of the page. When the results are shown, you can use the list on the right side of the page to choose which forums you want to see posts from.
When you feel more comfortable, you can start to join in the discussion more if you want to by replying to posts or posting your own updates and questions. Members can also send each other private messages that aren’t visible to others, and you don’t have to reply to these if you don’t want to. You can also ‘mute’ the sender, if you don’t want to receive their messages. There is information about how to do this in the HealthUnlocked Help Center at the bottom of the page, if you search at How do I mute someone who is private messaging me?
Another important aspect of online support is moderation. For people to feel safe sharing sensitive experiences, it’s important that they feel confident that the online space is being monitored and steps taken to edit or remove any inappropriate content. Fortunately, the vast majority of users simply want to receive and offer support in a respectful community atmosphere. Every online platform has its own community of members and the tone and content of their discussions will vary. If you find that one platform isn’t the right fit for you, you can try others until you find one where you feel more comfortable.
However, very rarely, members may use the space in a way that makes other people feel uncomfortable or upset. If you’re exploring a new support platform for the first time, you can look for any guidelines about how the hosts ask members to use the space and when steps are taken to resolve any concerns. The My Ovacome forum guidelines are here: healthunlocked.com/ovacome/... If any post or interaction in the space concerns you, you can report it to the moderators. In the My Ovacome forum, we invite all members to tell us of any concerns. Not all of the content that’s reported to us breaches our guidelines, but we want our members to feel confident that their concerns will be carefully considered and steps taken to address any issues.
There are some situations in which online support might not be the most appropriate form of support for you. In an online setting, everyone has an opportunity to share what’s on their mind and receive support from the other members. If you feel that you need to explore your experiences at more length or in greater depth, you may benefit more from one to one counselling or contacting a helpline. If you’re seeing a counsellor or using a helpline, you can also access online support.
Something to bear in mind when visiting an online support platform is that one of the members may say something or raise a subject that you find extremely upsetting or difficult to cope with. If you think that you may be upset if certain subjects are mentioned, you can consider whether using online support is the right choice for you at that moment. If you do decide to visit the platform, you can always log out and come back another time if you want to.
You can access online support for as long as you find it helpful. As with any form of support, after a while many people feel ready to stop using it or to access it less often. If you think that accessing the platform is no longer helping you, or is keeping your focus on your diagnosis more than you feel is right for you, you can try stopping for a while and seeing how you feel. You can always go back whenever you feel that you would benefit from the support that it offers.
If you’re interested in online support, there are a few different ways of finding out what’s available. for you and we are happy to help with this. You can search online or ask anyone you know who might be able to help. Your Clinical Nurse Specialist or another member of your team may be able to tell you about support that they know of. If you would like us to look into sources of online support for you, please get in touch with us. If you would like to share your experiences of online support or have any tips for someone thinking of using it for the first time, please comment on this post. If you would like information or support, please contact our Support Line on 0800 008 7054 or email support@ovacome.org.uk.
Best wishes
Julia & Anna
Ovacome Support
