When we are hit with an unexpected autoimmune disease diagnosis, we can suddenly find ourselves drifting in a sea of emotions. It can be a lonely experience, one in which we long for dry land so we can catch our breath. For some, the diagnosis may be bittersweet: you finally have a concrete answer to explain your symptoms, though there is also the fear of what the future may hold. For others, the diagnosis may have brought feelings of frustration or sadness as they struggle with the reality that the body can’t quite do what it did pre-symptoms.
All of these emotions, along with many others, may happen at different times along the journey.
A startling diagnosis
My journey with systemic lupus erythematosus officially started at the age of 23, although symptoms began to appear around when I was eight. It wasn’t until a traumatic event in which I was hit by a truck as I crossed the street that the symptoms came out in full force, and all at once. As I recovered from my injuries, I became very ill and within three weeks, I received a diagnosis of a disease I could barely pronounce.
Today, when I talk about lupus and other autoimmune diseases publicly, I often liken having the disease to being surrounded by water, as it has the ability to seep into every area of your life. Similar to water, the disease can also cause great pressure and have the ability to shape you in ways you never imagined
A loving community
The autoimmune disease warriors I have met over the past 20 years are some of the most resilient, hopeful, and encouraging human beings I’ve ever come across. And I’ve become deeply connected to these individuals as we share the growth, patience, self-love, and that lupus has brought to our lives.
Because every day is different with lupus, we become experts at being creative and flexible when things don’t always go as planned. What may take a healthy peer completely off course, is met by us with the attitude that we can adjust our sails and make it through the day just as we have done so many times before.
As autoimmune disease affects our energy and usable time, we learn how to better spend our time and energy with those who support and love us, or we rest and care for our bodies.
Because lupus has the ability to pull the rug out from under us time and time again, we become more and more resilient, learning how to rise up yet again through radical acceptance of what is rather than being crushed by the weight of something that can feel so heavy.
And because autoimmune disease can cause us to feel completely frustrated and angry by our bodies – and lack of control in what is happening in them – we can make the choice to shower ourselves with patience, self-love, and nourishing words to build up these bodies that are trying so hard to survive.
The next time you face a difficult moment with lupus, remind yourself of these truths: it is okay to feel a variety of emotions, and it is okay to pause. But don’t lose yourself in that space. Don’t let lupus win.
Instead, remember who you truly are: a warrior who is becoming more resilient with each challenge that is overcome; a role model to everyone around you, one that continues to pursue purpose and meaning in the face of insurmountable odds; and a beacon of light, wisdom, and hope for those who are just at the beginning of their journey.