Learning about a health issue can feel isolating at first. Teaching yourself about these differences and how they will impact you and your loved ones can be a lonely and frustrating uphill battle. Those differences can also create rifts in your existing relationships. Whether or not you receive a diagnosis, awareness of those issues and learning how to cope and manage them will call on others to be supportive, understanding and patient with you and your family through it all.
Why is that support so important? Let’s use a pop culture example. In the classic video game The Legend of Zelda (first released in 1986), the player starts the game with no weapons or defenses, but is gifted a sword by a character who admonishes you “It’s dangerous to go alone!” Through the game, all sorts of obstacles and enemies threaten your safety and progress, proving the warning to be true.
While the battles we face in our own lives rarely call for swords, it’s still dangerous to go alone. Studies show the serious health risks of loneliness and isolation.[1] People need people, and grappling with health issues calls for supportive family, friends, and service providers who can be there with you and help lend an ear or a shoulder as needed.
According to an article in Autism published in 2018, formal support services do not always meet the needs of families with ASD children. Stress levels in these families are high, and informal social support from other parents is hugely important. For parents, support needs to address the needs of the whole family (including parents and neurotypical siblings).[2] Likewise, ADHD, anxiety and depression can be very alienating.
The good news is that strong communities exist in the form of support groups, service providers, as well as families and individuals dealing with these issues. They both can affirm what you’re going through and relate their own experiences.
As a parent of neurodiverse daughters, I look forward to my Autism Spectrum Dads zoom meetings each week, where I get to hear from others who are familiar with what we go through. I enjoy seeing the speech and occupational therapists each week and learning how they can work with my youngest. What’s really surprised me is how much I’ve come to look forward to the support from others. I always saw myself as more of an introvert and a loner, until there were things going on in my life that I needed others to help me understand.
It’s important to acknowledge how significant that is. A lot of times, social stigma can cause us to try and hide and diminish the struggles we face. Why do we feel embarrassment or weakness about these issues? Awareness and advocacy work together to encourage, strengthen and empower people to find the help they need.
A few important things happened when I began to let other people into my life and my experiences with my daughters. First, I had my concerns and frustrations confirmed and validated. Experienced people who could relate to what my wife and I were going through began to affirm what we saw. We were no longer frustrated — you can feel like you’re getting increasingly discouraged when you’re the only one who seems to see what is going on in your family.
Second, I had other people who could offer me experience and ideas for how to address the problems we faced. I wasn’t in it alone, and the others (friends, supportive family, and service providers). Part of the anxiety or frustration we might feel in these situations comes from the uncertainty or lack of knowledge we have. Nobody truthfully expects us to be an expert though. We can learn plenty from those who have been there before.
Lastly, I found my existing relationships got better as well. Because I had supportive people in my life, I wasn’t as stressed about the people who didn’t get it. If I wanted to continue having them in my life, it was on my terms, and I wasn’t under any duress of feeling isolated because there were new support networks I had tapped into.
It can be really dangerous to go it alone. We are going to make mistakes, and we certainly aren’t perfect. But learning from the experiences of others through interventions, support, and service providers, can help us build a network that will get us through those circumstances with less stress and more care than we would ever experience by ourselves.
Poppy Life Care is all about finding those support networks at every stage in our lives. Our providers are aware of the needs people face when dealing with brain health issues, and we want to be part of your support network. Please take some time to explore the different options we have and remember that finding support is part of building a community that will carry you through. Managing and coping with these issues is easier with others, and we can help connect you to resources that can make a difference! Click here to schedule your 30-minute consultation.
[1] Novotny, A. (2019) The risks of social isolation. American Psychological Association. https://www.apa.org/monitor/2019/05/ce-corner-isolation
[2] Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L., & Pellicano, E. (2018). ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum. Autism, 22(5), 571–584.
