Two similar people living with the same health condition may have varying symptoms, a range of responses to daily difficulties and unique ways of finding peace. The very concept of “support” means one thing to you and likely something altogether different to your neighbor.
There is no single right answer for how one copes, where one seeks solace. Instead, every answer is correct. From support groups to support animals. From family to nature. From faith to creativity. Even the mirror.
To celebrate this one-size-fits-one reality, we asked Health Stories Project members living with various conditions to share where they turn when faced with health-related challenges. These are just a few of their responses, along with others shared with us over the years. Not everyone has a reliable source of support, of course. We hope that in highlighting that truth here, more eyes and hearts will open to the needs of others.
“I’m a part of a lot of groups online. I find reading their stories helps. I love when people share because it can help someone. I do the same. I share my journey daily and find that it helps others as well.”
– Member, diagnosed with lupus
“Do your research. Knowledge is empowering! Focus on the moment instead of the what-ifs. Advocate for yourself and ask for help. Work through the guilt and regrets. Give yourself grace and take time to heal.
– Nikki C., diagnosed with migraine, fibromyalgia, sleep apnea, insomnia
“I have always been self-conscious and negatively impacted by [my condition] so I can’t say that I have found the necessary strength and support to deal with it in a positive way yet.”
– Member, diagnosed with vitiligo
“Community at the dialysis center. It provided emotional support even if they didn’t realize it.”
– Member, diagnosed with a rare renal disease
“When [it] is at its worst, I start up a video game and Spotify. If that does not work, I talk to friends on Teamspeak or Discord. As a last ditch effort, I will contact my therapist.”
– Member, diagnosed with schizophrenia
“Practicing CBT [cognitive behavioral therapy] and giving myself plenty of self-care helps me get through difficult episodes. Sadly, I don’t have much support or understanding from the people in my life when it comes to my mental health, but I have learned to get through it OK on my own.”
– Name, diagnosed with mental health disorder
“Be your own cheerleader. Treat each condition equally when it comes to your health. We must not minimize one disease over another one. We should know how one affects the other and utilize all the resources you can for support.”
– Sylvia F., diagnosed with lupus, type 2 diabetes, migraine
“I have no support system where I’m at. My family cast me away due to my diagnosis so basically I’ve been going through this alone.”
– Member, diagnosed with HIV
“I joined online Facebook support groups and also attended a monthly in-person support group.”
– Member, diagnosed with kidney disease
“I have a service dog that helps me along with coping skills I have learned after years of therapy.”
– Name, diagnosed with a mental health disorder
“Finding other people that go through the same realization and sadness and denial and loops that I do. Online group support during the pandemic has been a lifesaver!”
– VS, diagnosed with an autoimmune disorder
“I have a best friend that I can turn to for lots of support. I also pray to God and read a lot of books.”
– Member, diagnosed with a mental health disorder
“I actually do motivational speaking myself. I am a part of a lot of groups on Facebook, Instagram pages and reading blogs. It helps to share and not feel alone. Sometimes I find out things that I didn’t know. A lot of people are scared to share but when you do, it can help someone else!”
– Member, diagnosed with a rare renal disease
“Finding other people that go through the same realization and sadness and denial and loops that I do. Online group support during the pandemic has been a lifesaver!”
– VS, diagnosed with a skin disease
“I’m really lucky I have good family support that’s been there when things were bad. I don’t think I would have bettered my life without my family being there when situations were really ugly.”
– Member, diagnosed with schizophrenia
“I’d thank other parents who have children with critical heart defects like my daughter. For the 2 am calls or texts knowing what to say and when to say it. And sharing your life with ours. There is no guidebook for us in the life of very sick children. And knowing someone knows exactly what I’m going through is precious to me in a way others who don’t live with this cannot relate”
– Jill, parent of a child diagnosed with a heart defect
“Writing and playing guitar.”
– Member, diagnosed with a mental health disorder
“It begins with a simple hello, and to then be open to listening to others. Make yourself vulnerable and open up your heart and mind. The easy part is finding the place to connect. Actually connecting with others is more of a challenge.”
– James C., diagnosed with HIV
What does “support” mean to you? Share your story with the community.
