When a young adult is diagnosed with cancer, it upends their life and sends shockwaves through the lives of those around them. In our eagerness to support, we may unintentionally cross into overly supportive territory, potentially leading to unintended consequences. At b-present, we are dedicated to guiding our community in refining their support strategies to enhance the well-being of young adults facing cancer.
Our Supporter Roadmap helps young adult support networks navigate this difficult time. It emphasizes the importance of understanding how our loved ones want to be supported beforeorganizing and offering support. Understanding their needs and boundaries ensures they get the support they need when they need it. It mitigates the added stress that comes when well-intentioned but unhelpful support is offered.
Recognizing Overly Supportive Behavior
Overly supportive behavior, rooted in love and concern, can become overwhelming. Understanding these tendencies is crucial for adopting a more mindful approach to support.
The Constant Caregiver
Consider a scenario where help is non-stop. Meals are always ready, and every conversation revolves around health updates, often overwhelming the individual seeking normalcy and autonomy.
A Real-Life Example: Sarah’s Story
Sarah, 25, recently diagnosed with cancer, is enveloped in a wave of support from friends and family. Her best friend, Emily, becomes the epicenter of this support, organizing meal trains, group chats, and social media campaigns to rally support. Initially comforting, this barrage of support soon becomes suffocating for Sarah. She begins to feel like her personal challenges have turned into a public spectacle, limiting her ability to express her true needs and feelings.
Emily’s well-meaning actions highlight a common pitfall of overly supportive behavior: the overwhelming intensity and volume of support can block the individual’s own needs, leading to stress rather than comfort.
The Optimism Overload
Demanding optimism, with constant reminders to “Just stay positive” or assurances that “Everything will be fine!” can pressure the individual to mask their true emotions, intensifying feelings of isolation.
The Rallying Cry
Attempts to demonstrate support with public displays or social media initiatives can unintentionally turn private struggles into unwanted public affairs, heightening the discomfort of your loved one. It is important to honor the privacy boundaries of the person diagnosed and not overshare without their approval.
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The Unintended Consequences of Being Overly Supportive
The results of overly supportive behavior can deeply affect the mental and emotional well-being of young adults with cancer.
Increased Stress and Anxiety
The relentless focus on positivity and recovery can increase stress, placing an unnecessary burden on the individual to update, thank, and reassure their supporters.
Loss of Personal Space and Identity
Overly supportive actions that overlook the need for privacy and autonomy can amplify the loss of self, pushing the individual to yearn for interactions that transcend their illness. The b-there connection & support app helps minimize unwanted or misaligned interactions by helping supporters know how and when to show up, or when to give space.
Strained Relationships
When support becomes overbearing, it can strain relationships, leading to withdrawal and isolation at a time when genuine connection is crucial.
Navigating Support with Sensitivity
Identifying the delicate balance between being supportive and overly so is essential. Support should respect boundaries, embrace the full spectrum of emotions, and sometimes, simply provide a quiet, unassuming presence that respects the individual’s need for empathy, authenticity, and normalcy.
Offering Support without Overstepping
Gestures like sending a no-pressure message or engaging in non-cancer-centered activities can be profoundly supportive, acknowledging the individual’s struggle while respecting their autonomy.
Creating a Safe Space for Authentic Expression
Fostering an environment of open, judgment-free communication allows individuals to express their true feelings, ensuring they feel heard and understood without the pressure to appear strong.
Striking the Right Balance
Supporting a loved one with cancer can be scary and overwhelming, but your loved one needs your empathy and understanding now more than ever. By being mindful of our approach and sensitive to the unique needs and boundaries of young adults, we can offer support that truly uplifts, empowers, and most importantly, respects the individuality of each person’s cancer experience.
At b-present, we are committed to cultivating a community of support grounded in intention, empathy, and genuine connection. We invite you to join us in rethinking how we support young adults with cancer, ensuring our actions and words provide upliftment without overwhelming.
After a cancer diagnosis life can feel chaotic. Choosing a good connection and support app can help everyone stay on the same page and keep things running smoothly. If you are new to the cancer experience, you may not know where to start with organizing support. Our Supporter Roadmap is a great first read to find helpful information and tips to navigate this difficult time.
Understanding what is ahead and how your loved one with cancer wants to connect and be supported will help frame how to move forward and work together to organize and empower the support network. The next step is finding some helpful tools and resources to make communicating easy, keep you up to date and in sync with their needs.
Finding the Right App
There are a variety of apps and tools available to help with organizing support, connecting patients with their caregivers and peers, and improving communication and connection. For example, if you want a simple and easy tool to clearly communicate with each other, the b-there App for connection and support is a great option. Click the button below to learn more.
It is often a personal choice when it comes to selecting the best app(s) for the job, and it depends on the needs of the patient and the support network. Continue reading for some helpful tips to find an app that is right for you.
Questions to ask:
Ease of use
Is the app user-friendly and easy to navigate?
Does it have a clear and simple interface that allows users to find the information they need?
The more complex the app is, the less likely people will use it.
Customization
Does the app allow users to customize their profiles and communication preferences? This includes setting privacy settings, as well as selecting who has access to certain information.
Features
Does the app have features that are useful for both the patient and the support network?
Some examples: requesting support (meals, transportation, errands, visits, items), sharing status updates (short form or journal entries), desire to connect, and private messaging.
Privacy/Security
Does the app protect personal information and data?
Does it require user authentication to login?
Are you able to delete people from your network, as well as completely delete your account at any time?
Community
Does the app have a supportive community of users who can provide support and advice?
App features to consider
Define the key features and functions most helpful and important to the loved one being supported and the support network. Consider getting together to discuss your goals with using the app and brainstorm what features are necessary. Everyone will have different goals, so try to find a good compromise.
Below is a list of features to consider:
Login + Authentication
Do you prefer to use one of your existing accounts to log in or do you prefer to use your email and create a password?
When you are done using the app, are you able to completely delete your account (caution: uninstalling the app does not necessarily mean your data is removed).
Profile
Do you want to be able to access your contacts, photos when creating your profile?
What kind of information is important to include in your profile?
Is the information optional or required? Having fields that are optional is nice and gives you the flexibility to share as you see fit.
Network Setup
Prefer an invite-only network or do you want anyone that wants to help see your status and needs?
Want to limit what each person sees?
Do you want to be able to delete contacts that are less than helpful?
Status + Updates
What is your communication style?
What will be most helpful for the group to organize support and be present to best match your needs?
Direct and to the point? Or is a journaling format more your thing?
A journaling feature is helpful for processing emotions as well as keeping people updated, and some supporters enjoy reading the longer entries. However, other supporters may prefer short, clear directions so they can best understand how you are and how they can show up for you. With a journaling style, they may still need clarification on what support is needed, so make sure other features address this more immediate information need.
Calendar + Scheduling
Is it important to have a calendar within the app, or do you prefer to use your own calendar to track events and tasks? There are advantages to both, and it just depends on whether you will be diligent about checking multiple calendars or prefer having everything in your master calendar associated with your email.
Wishlist
Do you want to be able to coordinate needed items or activities? If so, a wish list can be a useful feature. To avoid duplication, ensure there is a signup management feature so that once someone claims a wish, it is no longer available to others. This will save time and avoid confusion and duplication of wishes. Also, being able to provide links to exact items, shared documents or lists reduces stress for everyone.
Messaging
Do you want to have a messaging system within the app, or is it easier to use your existing communication methods separately from the app? Similar to the calendar feature, things can get missed if you have to track multiple apps. Also, consider whether the loss of those messages after the account is deleted is a problem.
Notifications
Do you want to be notified when there are updates? If so, how?
Do you want to have the flexibility to adjust your notification preferences?
Health Information Tracking
Do you want the app to be a full-service app that tracks other health information as well? It can be nice to have everything in one place, but may also create a much more complicated app experience. This is especially true if you are connecting to other health or hospital systems.
Although not a complete list, the feature list above will get the conversation started. Once you have your list of needs, compare it to the features and functionality of each app and select the one that best fits those needs. In some cases, you may need more than one app to meet your support needs.
When in Doubt – Ask the Community for Their Input
If you still have questions or are unsure, consider asking health professionals, other patients, and caregivers that have experience to get their feedback on a particular app. Before making a final selection, confirm it will work for everyone. If the app is too complicated for the group, or not available for their mobile device, those can be deterrents to staying coordinated.
Connection and support app options
Several online connection and support apps are available. Here are a few apps designed to improve connection and support after a cancer diagnosis (listed alphabetically):
b-there connection & support: A free mobile app that eases communication and connection. Patients and survivors can share their status, desire to connect, manage activities, and request needed items. Supporters can check the app for updates on how their loved one feels before connecting or stopping by, and they can sign up to fulfill items from their wish list.
CaringBridge: A free, personal website that allows patients and their loved ones to share updates, photos, and videos. It also provides a way to schedule meals, rides, and appointments.
Ianacare: A platform that makes it easy to coordinate and schedule help and support for patients and their caregivers. It also provides a way to connect with other people who are going through similar experiences.
Lotsa Helping Hands: A care coordination platform that enables friends and family to provide support to loved ones during a health crisis.
MealTrain: A meal coordination platform that makes it easy for friends and family to sign up to bring meals to patients and their caregivers.
Have you had a good experience with another app? Contact us and share the link.
Helpful tips for using the app
After selecting the app, these steps will help ensure the best experience possible.
Send everyone the app information
Send them a link and be sure it is available on their mobile device. Urge them to download the app, register, and set up their account as soon as possible, ensuring they are ready to support when needed. If it is helpful for group members, set up a time to get together and walk through the app and help everyone become familiar with it.
Agree to some basic support ground rules
Setting a few ground rules about group behavior, including communication etiquette, providing timely updates, checking the app regularly, following through, responding to wish invitations, and honoring visit and support preferences, will keep things on track. It may help to identify a lead and a backup supporter to ensure timely updates are provided when a loved one is unwell or unable to provide their own updates. A tool is only as good as the information provided, so if it is outdated or incorrect, you may get the opposite effect, discouraging the support network from staying connected, and worse, causing the person needing help to feel unsupported.
Check the app regularly
Notifications vary from app to app, so everyone needs to check the app regularly so updates and needs are not missed. Life gets busy, so setting a regular reminder to check is always a good plan. Once support is underway, work together to keep things running smoothly. Needs and updates will vary, but if there is an important update and you want to make sure everyone sees it, you can also use a group chat urging everyone to check the app (remembering to honor any privacy guidelines set out by the patient on these other channels).
Be specific with needs
When asking for support or comfort items, the old saying “be careful what you wish for” holds especially true here. If you have something specific in mind or if there are some critical date/time/location requirements, be as specific as possible. This means including links to shared documents or lists or, as appropriate, a URL to a specific item so the supporter clicks the link and has a clear idea of what is needed (or buy the item). The clearer you can be, the better – it will reduce confusion and stress for everyone.
We’re stronger together.
It takes a village to support someone going through a difficult life event like cancer, so work together, be flexible, be patient, and kind to each other. The experience will likely be new for everyone. A good coordination tool is only one piece of the puzzle. Good communication is also vital to providing good support. We don’t know what we don’t know, so being clear will save time, energy, money, and, most importantly, reduces stress and uncertainty. Have each other’s back, try not to take things personally, and respect your loved one’s choices and decisions.
By following these basic guidelines and using the tool(s) consistently, you will be stronger together. By everyone doing their part, the workload will be more manageable, and the quality of life will improve for your loved ones and you.
Supporting a friend or loved one who has been diagnosed with cancer can be overwhelming and emotionally taxing. It’s important to remember that, as a friend, you have the power to improve on your loved one’s experience. However, it’s crucial to be intentional in your support to ensure that you provide the most effective and beneficial assistance possible.
Understanding Your Role and Setting Intentions
To be intentional, start by clarifying your priorities and goals in supporting your friend. This clarity will help you align your actions with your goals and determine how you will spend your time and energy. For instance, if your aim is to offer tangible support, consider helping with household chores, preparing meals, or driving to appointments. Taking notes during medical visits can also be immensely helpful!
Fostering Connection and Communication
If your goal is to ensure your friend feels less alone, create opportunities for regular in-person or virtual interactions. Continue to include them in social events, understanding that they might not always be able to participate. Should your focus be on being a supportive listener, understand their preferred communication style and be consistent in your approach.
Practice active listening
One of the most important things to keep in mind when supporting a friend with cancer is to listen actively and be present. Cancer can be isolating, and many people feel they are facing their diagnosis alone. You can help your friend feel heard and understood by actively listening and being present. This can be as simple as asking how they’re feeling, being available to talk, or simply being there to hold their hand.
Another critical aspect of supporting a friend with cancer is respecting their boundaries. Everyone’s experience with cancer is different, and what one person needs or wants may not be the same as another. It’s important to ask your friend what they need and to respect their wishes. For example, if they don’t want to talk about their diagnosis, please respect that.
Words Matter
Be mindful of the language you use when talking to your friend about their cancer. Avoid using language that minimizes or trivializes their experience. For example, starting your response with “At least…” immediately minimizes their feelings. And avoid making assumptions about what they are going through. Instead, use language that is inclusive, empowering, and non-judgmental. For example, instead of saying “I know exactly how you feel, my _____ had _____” try something that acknowledges their experience is unique to them. Instead use “That must be really difficult” or “I can’t imagine what was that like for you.”.
Offer practical support
In addition to emotional support, you can also provide practical assistance. For example, you can offer to drive your loved one to appointments, help with grocery shopping, or help with cooking meals. These small acts of kindness can make a big difference in the life of someone going through cancer treatment.
Be consistent when supporting a friend
Support for a friend with cancer is not a one-time effort. The need for support doesn’t end when treatment ends. The road ahead is often long and difficult. Be patient and understanding, and continue being there for your friend through all the ups and downs.
Balancing Support with Self-Care
Supporting a friend with cancer is a challenging but rewarding endeavor. Remember: You can’t be a good supporter if you’re running on empty. Balance your own needs with the needs of your friend. Whether that’s ensuring you schedule in your own self-care, start therapy, etc. Think about what you need in order to feel like you can support your friend without sacrificing your own well-being. By being intentional, actively listening, respecting boundaries, using supportive language, offering practical help, and being patient, you can make a significant difference in your friend’s life during their cancer experience.
