Writing Your S.O.S. in the Sand: Connecting With Lupus Survivors
As it turns out, my message in a bottle was read by lupus warriors and caregivers from around the world and it was their support and encouragement that helped me through the most challenging lupus flare of my life. I started reaching out in other ways online, posting questions on the Facebook group Hot Chicks with Lupus. My fears and concerns were met with full acceptance, understanding, and non-judgement.
I joined Twitter and found an even larger network of lupus patients and advocates spreading awareness, positivity, and hope. Connecting with these individuals gave me a sense of community I’d never felt before.
Witnessing their fight for a healthy, quality life with lupus helped me take ownership of my own journey. Having “lupie comrades” and access to our shared experiences online or elsewhere is integral to feeling emotionally equipped to take on our day-to-day challenges with lupus.
Knowing that the pain we’re feeling, the medication we’re fearing, and the anxiety we’ve been hiding is being fought through and conquered makes it easier to ask for help and advice. Suddenly, there is a safe place to go, where our S.O.S can not only seen, but truly understood.
The Island Is Not an Island: Perception Is Key
Connecting with caregivers through my blog gave me a new perspective on the role my family and friends play within my support system. In the beginning, I envisioned them as specks on the horizon, incapable of understanding what it felt like to live with a chronic disease.
As soon as I connected with other people with lupus, I realized that asking my family and friends to have that same level of understanding made no sense.
When the caregivers I spoke with expressed the helplessness and inadequacy they felt in trying to support their loved ones emotionally, I realized that the oceans that divide us stretch only as far as we allow them to.
It’s important that when we find our voice and start to articulate our needs, we acknowledge that sometimes the people in our lives can only help us in specific ways.
I learned to seek out my lupus community online when I needed specific advice or an experienced ear and I discovered renewed gratitude for the other ways my friends and family support me: Cooking me a meal when I’m tired, keeping me company when I’m feeling sick, a thoughtful text to check in and see how I’m feeling, etc.
The people who love us feel the blow of our diagnosis as strongly as we do. They feel their own pain as we feel ours. They may seem oceans apart at times, but it’s important to remember that both the caregiver and patient are on common ground and that the caregiver may need support and direction when it comes to meeting their loved one’s needs.
In the end, it isn’t so much about getting off the island, but deciding who you want there with you. I already had access to the support network I needed, I just had to make the choice to connect with it. I learned that tapping into the healing power of shared experience plays just as important role in my overall health as regular exercise and a healthy diet.
The realization that you are not alone is only the first step. Cultivating and sustaining a strong support system requires investment and thoughtfulness from both sides. Ultimately, feeling safe enough to ask for help is what helps us realize that we have the strength to face our disease and rescue ourselves.
