Coping With a Lupus Diagnosis
4 Steps to Adapting to Life With Chronic Illness
Cope with a chronic illness diagnosis through small, mindful changes to your everyday routine. “Chronic illness is just one iota, one tiny ingredient that can be added to the cosmic mixture of what makes up a human.”
I was diagnosed with lupus when I was just 17 years old, a diagnosis which totally threw my entire life off balance. At 17 you are meant to be preparing to go to college, having adventures with friends, exploring your identity. But instead, I was harshly slapped with rampant panic attacks, migraines that lasted days, random bouts of tachycardia, and joint pain, among other fun symptoms. And as with any chronic illness, these sorts of symptoms wouldn’t be going away. I wouldn’t have much choice but to adapt to this new reality.
There are four major changes I made following my lupus diagnosis to deal with my chronic illness. The benefits of these changes are not restricted to fighting lupus, and could most likely be applied by anyone who lives with chronic illness, or even without.
1. Move Your Body
While exercise seems counterproductive to joint pain, it is actually commonly recommended as part of chronic illness treatment to try to move your body each day. I chose to implement this through daily yoga practice. Let me be clear that this does not mean I am standing on my head each morning. I began by simply following novice level YouTube and Instagram guided practices, such as those by Yoga with Adrienne or ActivelyAutoimmune.
Committing to a daily practice can be a daunting task, that is why I simply say, “Move your body.” As long as you can do something—even if it’s just gathering the energy to shower—that is a victory in itself. You don’t have to be a master yogi to implement a daily practice, and you don’t have to become a master yogi anytime soon (or ever). Simply move your body and watch how it alleviates the pain.
Note: There will be some days when you can not move at all. You are just as valid in rest as in movement.
2. Recenter Your Diet
One of the first things that came up when I began researching my illness post-diagnosis was how food can affect inflammation, and ultimately lupus. I began by cutting out certain foods to see how I felt when they were absent. From dairy to nightshade vegetables to gluten. In the end, I settled on simply cutting out gluten and then avoiding the others when possible. I constantly rave to friends and family—and even strangers when they’ll let me—about what a difference cutting gluten out of my diet has made. It’s not just a fad diet!
In addition to the cuts, I also added a lot to my diet. I was consuming more raw vegetables and fruits, and ensuring that I was making good brand choices when it came to more processed foods like cereals and other snacks.
You don’t have to totally cut something out of your diet to reap benefits. Simply reducing your intake of processed foods, dairy, gluten, or other foods that you may find bother you can be valuable. Certainly don’t make yourself miserable by obsessively watching everything you put into your body that will only make you feel worse.
3. Find Your Community
Chronic illness can be very lonely. Especially when you are young (and young is subjective), it can be hard seeing other people your age thriving and healthy when you feel like you can barely get out of bed each morning. But you are not alone. The chronic illness population in the United States is robust. According to Lupus Foundation of America, some 1.5 million Americans are lupus warriors, and 5 million worldwide. With social media, it has never been easier to find others like you.
Community doesn’t have to be physical. Online communities like Instagram pages, Facebook groups, and Tumblr blogs offer a sounding board, along with helpful advice from chronic illness veterans and newbies alike. I have found that Instagram is my lupus safe haven. It is a platform where I have made many friends who share in my pains and passions, who check up on me just as I check up on them.
You are ill, but you are not your illness. Your illness does not define you. Your illness is not your fault. We have all heard of these things and more said to us by doctors, our loved ones, and maybe even ourselves. But these statements can sometimes be hard to truly believe. It can be so easy to get swept up in the mindspace that there is something you could have done to prevent getting sick. Maybe if you hadn’t eaten that, or if you had exercised more, been more careful … we get sucked into this endless loop of self-blame.
But the reality is this: No amount of self-doubt will magically make you healthy. In fact, this kind of negative thought process may just cause you unnecessary stress that could be potentially detrimental to your health.
Instead of asking yourself what you could have done to prevent all of this from happening or blaming yourself for something you have no control over, choose to forgive yourself. Forgive the universe. Even forgive God if you have one. Because you can never truly move on from your diagnosis, your illness, as it will always be a part of you. But you can forgive it. Chronic illness is just one iota, one tiny ingredient that can be added to the cosmic mixture of what makes up a human. So forgive each little molecule, each grain of stardust, each little part that is all you.
For more on coping with a chronic illness diagnosis, check out “How Meditation, Mindfulness Help Ease Chronic Illness.”