I recently had a conversation with a fellow "lupie" about some tests she had recently. She shared great news and her relief was palpable. We talked some more and I mentioned feeling like her victory was my own; that it made me feel stronger. The phrase, “It takes a village” came to mind, and from there, I contemplated healing as a team effort.
Those of us living with lupus know that we always have lupus, even in periods of remission. We may have stretches of time with little to no symptoms, but we never get rid of the disease (unless you’ve experienced drug-induced lupus, which can be reversed). Healing is an ongoing effort for those living with chronic illness, and some people have no friends or family to lean on when things get tough. Some lupus warriors don’t have access to good doctors, support groups, transportation, the internet, neighbors, etc. On top of the disease they live with, they do all of this alone...and who wants to experience that?
Can you imagine how much more challenging it would be to simply survive?
What would it look like if we attempted to make the phrase, “No one fights alone” a rule for our communities? I believe that healing can be a team effort for many of us.
To help put this in perspective, I’ll give a personal example: I moved to a rural community several years ago. The entire county is a vast expanse of rolling hills, forest, and farmland dotted with the occasional village or town. Under 400 people live in my village. Internet access is a luxury, and many residents don’t have access to transportation. Ride-shares and taxis do not exist in my village, nor do buses. The closest town is 15 minutes away via highway, so if anything you need is there, you’d better have a car, or a friend willing to give you a ride. Two of the most common struggles I am aware of in places like this are accessible transportation, and access to information (the internet is a huge source for this).
You can understand how this would disrupt treatment and healing. If you can’t get to your appointments or the pharmacy due to lack of transportation or help from family or neighbors, and if you don’t have internet access for e-resources, how can you receive the treatment and support you need? Your healing may look drastically different from someone who has access to all of the above. Why not recruit people to our teams instead of leaving them on the sidelines?
There are many ways we can make healing a team effort. Below are just a few of countless ideas to strengthen our Lupus Community:
Making Healing More Accessible
Let’s begin to take note of those in our community who don’t have access to the resources we do... If we attend a support group that a friend wants to attend, but she doesn’t have a car, perhaps you could offer a ride.
We can run errands for our fellow lupies who have a lot going on.
Sending gift cards or assembling care packages can be rewarding for everyone involved - remember to be cautious with foods and scents, as some have allergies!
Prepare or bring meals to others undergoing difficult treatments. One of my good friends cooked lunches for me while I was going through a huge medication adjustment and commuting 3 hours/day. It was such a relief to not have to think about preparing a lunch on those days while I was experiencing side effects and the exhaustion brought on by driving.
Knowledge Is Power
You might consider printing off blogs, bringing books, or new findings in research, to share at support group meetings.
If you have internet access, and a person down the street does not, you could invite them to your home to look up resources and good rheumatologists together.
Take notes at the lupus conferences you attend and share with your neighbors.
If you feel safe and comfortable with it, you could chat with others across the country who live with lupus and other autoimmune diseases. Searching hashtags like, #lupus, #lupuswarrior, and #livingwithlupus are good places to start.
Remember that not everything in your world has to revolve around your lupus. You can spend time sharing your hobbies with others, call or text friends and loved ones, or watch your favorite shows together. One of my favorite things to do is text message my reactions to TV shows while a friend watches with me across the country in real-time. Anything that fosters connection is bound to make us more resilient. Let’s make a commitment to connect with others when we have the time, space, and energy. I don’t doubt for a moment that some of us could do this on our own if we had to. But for those of us who don’t, let’s make healing a team effort, and reach out to those on the sidelines.
Drug-induced lupus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561694/
Social Support and Resilience to Stress https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921311/
Blog by: Jes Mayhew
Jes Mayhew has lived with SLE for most of her life. She is a trained advocate and believes that everyone living with a chronic illness deserves to be heard, supported, and empowered.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2018.