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March
16
2021

Toxic Positivity

If you are offering support to a survivor of cancer or a rare disease, remember that you don’t need to try to make them feel better all the time. You can help by validating emotions and offering support.


Toxic positivity is when a person denies, invalidates, or minimizes a negative or distressing situation by overgeneralizing the positives. Although well-intended, jumping to positivity right away can cause shame and minimize an experience.


What phrases do you think are helpful to hear when going through something hard? ⬇️Comment below⬇️

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To learn more about toxic positivity and ways to offer support, visit Taking Charge of Your Survivorship

 

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March
13
2021

Conversation Toolkits

If you are a survivor of cancer or a rare disease you may know how finding the right words to communicate struggles and feelings can be difficult and exhausting. However, openly communicating with people in your life can allow you to feel more connected to a network of support.


A conversation tool kit can give you the words to communicate your needs in a way that feels authentic and healthy.


What conversations have you found difficult to have with friends or loved ones?

Share below ⬇️

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March
5
2021

Share Your Story

Your story matters!

Personal stories create human connection, and explore reality and possibility. Sharing knowledge and wisdom from your lived experience can help make sense of your past while bringing hope and inspiration to someone whose journey reflects your own. When we share our stories, we become part of something bigger than ourselves.

Every individual that has been touched by cancer or a rare disease has a unique story to tell – whether survivor, parent, sibling, caregiver or supporter. Your telling can be therapeutic, bring new perspective, build community, and weave a gift of hope.

CaringBridge is a great place to share your story with others. 
⬇️ Comment below ⬇️ how sharing your story or hearing the stories of others has impacted you.
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You can also share your story and read the stories of others on Taking Charge of Your Survivorship: 
Share Your Story  

February
23
2021

Rare Disease Day

Rare Disease Day is Sunday, February 28th

#RareDiseaseDay is an important day to raise awareness for people living with a rare disease and their families.

🌀More than 300 million people are living with a rare disease around the world.
🌀72% of rare diseases are genetic
🌀70% of genetic rare diseases start in childhood
🌀The majority of rare diseases have no cure
🌀Over 6,000 rare diseases are chronic, progressive, degenerative, disabling and frequently life-threatening

People living with a rare disease and their families are disproportionally affected by stigma, discrimination and social marginalization.

By raising awareness and improving knowledge, there is a call for action to increase equity for those affected by a rare disease. This includes improving social opportunities, non-discrimination in education and work, and access to health, social care, diagnosis and treatment.

Help us create a dialog and continue to increase awareness by commenting below ⬇️
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#takingchargeofyoursurvivorship hopes to build a community for all individuals diagnosed with cancer, hematologic, metabolic, or genetic disorders. We hope the website serves as a tool to help individuals and families explore their sense of self and to #connect with a #community that understands what they have gone through.
Visit: https://www.takingcharge.csh.umn.edu/survivorship/
February
16
2021

Mind-Body Practices

Do you have a scan or a procedure approaching? Maybe you are seeing your friends after being in the hospital for a long time. Perhaps you are worried about your loved one’s upcoming appointment. All of these situations can make #survivors and #caregivers feel anxious, restless, and nervous.


Mind-body practices can decrease anxious feelings and help you feel calmer and more able to manage the situation. While there are many forms of Mind-body practices, breathwork is one practice that offers a simple, just-in-time way to switch the nervous system from an alert and active state to a relaxed and calm state.


Try it yourself with this 4-7-8 breathing technique:

▫️Prepare yourself in a comfortable position

▫️Simply bring your awareness to your breath

▫️Allow yourself a few natural breaths

▫️When you are ready, empty your lungs completely

▫️On your next inhale, breathe in quietly through the nose for 4 seconds

▫️Hold the breath for a count of 7 seconds

▫️Exhale forcefully through the mouth, pursing the lips and making a “whoosh” sound, for 8 seconds

▫️Repeat the cycle 6 times (about 2 minutes)


Do you have a favorite Mind-Body practice that has helped you feel more at ease?

Please share below ⬇️
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To learn more about Mind-Body practices and how you can incorporate a practice into your daily life, visit:
https://www.takingcharge.csh.umn.edu/survivorship/what-are-mind-body-practices

 
February
9
2021

Redefining Relationships

Sunday is Valentine’s Day ♥️


Valentine's Day is often a time we reflect on our relationship with others. While every survivor has a different reaction to the disruption in their lives that a serious illness brings, it's okay and normal if you've needed to redefine some relationships in your life, including the relationship you have with yourself.


Perhaps you are struggling to connect to your loved ones who can't fully understand what you are going through. Or maybe your old friends feel more distant while you’ve grown closer to new friends who share a similar health journey. Maybe you have confusion around who you are and what you now believe in.


While it’s normal to have shifts in relationships when you are faced with challenges, it doesn’t mean these changes are easy. The Taking Charge of Your Survivorship website has great resources to support you while you explore a new sense of connection. https://www.takingcharge.csh.umn.edu/survivorship/tools-finding-meaning


How has your journey with Cancer or a rare disease changed your relationship with yourself and others? Share below!

 

 

February
2
2021

Social Connection

A young adult survivor of Fanconi Anemia shared, “I can impact more people because I have gone through something so devastating….”


If you are a survivor or the caregiver of someone with cancer or a rare disease, Taking Charge of Your Survivorship would love for you to join us here to support one another and find social connection! 

We are happy you are here!❤️

Please share your name, where you are from, and the age you or your loved one was diagnosed below ⬇️

 

To learn more about Taking Charge of Your Survivorship, visit https://www.takingcharge.csh.umn.edu/survivorship/