The Importance of a Support System

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    A particular characteristic of hydrocephalus is that symptoms and challenges are often invisible to others, which can lead to a feeling of isolation. You’ve likely had moments where you felt like your entire world has been turned upside-down from the condition or complications. It is not uncommon for you to feel alone or misunderstood. Building a strong support system will provide you with more options for coping with mental and physical hardships. We are here to remind you that you are not alone and offer tips as well as suggestions for building a strong foundational support system.

    What is a Support System?

    A support system is comprised of individuals you have a relationship with and are reliable. Your support plan should be developed during times of little to no stress. “Support can be emotional- being there to talk, or lending a shoulder to cry on, or physical- taking care of things like grocery shopping or walking your dog” (Toporek & Robinson, 1999). Building your circle of support should be easy and informal. You can start nurturing supportive relationships by reaching out to a family member- text or calling, asking a friend out for a coffee/tea meet-up, having brief conversations with your neighbors, attending or participating in spiritual services/groups, and volunteering.  Support systems play an important role in helping you cope with the disruptions in life when crises strike.

    Who is Part of My Support System?

    First and foremost, remember that everyone’s support system will look different so finding the people that best meet your needs and those you can rely on for help is critical. Some people may have a large support network of friends, family, co-workers, teachers, or faith leaders, while others prefer a small inner circle they can lean on. The overall goal is to seek out and build a support system that will personally help you not only during stressful times but also as you navigate living with hydrocephalus. Now let’s discuss the various support sources you might want to consider as you begin to develop your plan:

    Family and Friends: Being surrounded by caring and supportive individuals can be greatly beneficial for your overall health and recovery. Close family and friends usually offer emotional support in the form of empathy, love, trust, and caring. They will be eager to assist you so don’t turn away their help. They support will provide you with the opportunity to rest and recuperate. 

    Neighbors: This can be your next greatest source of support outside of family and friends. Neighbors can be relied upon for quick errands or favors when crises strike, for example: caring for your pets, providing meals for you or the family, or yard work. 

    Coworkers: Work tasks can become overwhelming when you can’t be there. Having at least one coworker that you can rely on in your absence can be invaluable. When you are experiencing complications and can’t be at work, your coworker(s) might be able to assist you with any work-related issues.

    Healthcare Professionals (social workers/mental health/neurosurgical team): You will feel empowered if you are surrounded by supportive healthcare professionals. These individuals can help you deal with problems during and after hospitalizations as well as work through any other health-related issues. 

    Faith Leader/Clergy/Church members: Hardships can be emotionally and physically draining. Many people draw strength and hope from their faith or spirituality. Hospitals have chaplains available for anyone in need of prayer or other forms of spiritual guidance. Your community church can also be a great source of comfort and support during difficult times. 

    Online support groups: There is a multitude of health-related virtual groups which provide you with the opportunity to find one that is the best fit. Support groups can counter the feeling of isolation and not being understood. It is a platform for sharing your story as well as learning about the struggles of others with hydrocephalus. It can be viewed as an extra source of therapeutic support in your medical treatment. 

    The Hydrocephalus Association provides various forms of support:

    HydrocephalusCONNECT Peer Support – Hydrocephalus affects everyone differently, that’s why it’s important to have someone you can count on to support you in the way that you need. HydrocephalusCONNECT provides you with access to trained volunteers, via phone or email, who have been coping with the complexities of hydrocephalus.

    Community Networks – It’s important to know that you’re not alone as you deal with hydrocephalus. The Hydrocephalus Association’s Community Network provides localized support, education, and empowerment through the community. Our network hosts educational events, support group meetings, and other gatherings that enable individuals and families to connect.

    Share Your Story of Hope – Hydrocephalus affects everyone differently. Regardless of how you developed the condition, your story matters! Share your story of hope with the Hydrocephalus Association! Help us prove that people living with hydrocephalus are thriving despite the challenges of the condition, and give hope to others who are just starting their journey. Submit your story so we can feature it on our website!

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