Before I was diagnosed with lupus, I would never have predicted that two of my closest relationships in my late-thirties would be with my rheumatologist and my psychotherapist. Throughout my entire pre-lupus life, I craved company. It always seemed like anything worth doing was made more enjoyable by sharing the experience with others. This, above all, is what has fundamentally changed within me since coming to terms with my disease. I no longer depend on others for company. I truly enjoy my alone time.
All of my relationships have changed — most, unfortunately, have not changed in a positive way. As far as my social life is concerned, lupus has touched all aspects. Relationships with my immediate family, extended family, best friends and friends, acquaintances, co-workers, and even my dog have been affected. No one truly knows what I am going through day to day.
My immediate family no longer asks about my condition, since they live through the realities of it with me every day. Besides them, I have lost touch with most people I knew before my diagnosis. Lupus makes it physically difficult to engage in social interactions. I was plucked out of society and plunged into my new solitary lupus life.
When I do socialize, my interactions are limited because people have no idea what my life is really like. I learned quickly after my diagnosis that when most people ask, “how are you?” they want to move on and talk about other things, not talk about how you are really doing. Though I’ve been living with lupus for six years, I still haven’t found an appropriate response to the inquiry.
When I remember the relationships that fell by the wayside because of my health, I feel like I have been burned, left behind, uncared for, misunderstood, and forgotten. More importantly, I feel like I no longer care. I can no longer relate to most people and, therefore, I no longer care for or seek out their company. After all, how can I be expected to enjoy a night out when I can barely make it through a meal because of GI issues?
So, maybe it makes sense that my confidants have become two unlikely professionals. Maybe it’s funny, as I’ve thought at other times, recalling the social life I had before lupus. Regardless, I’ve come to treasure the few relationships that I have preserved: my beautiful son, my husband, and the few friends who have stayed by my side. As I continue to cultivate these relationships, I hope that I will be able to add more to their number, though I realize that they will be different than ones in my previous, disease-free life. But you know what? That may not be such a bad thing.
Have you or a loved one been diagnosed with lupus? Check out The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace.
Want more? You might also like:
Success Story: Curing My Patient’s Lupus, Leaky Gut, Depression, Brain Fog….Starting at the Gut
Living with Hashimoto’s? MS? Lupus? 3 Reasons to Give Up Gluten Now
Lupus Left Me in a Wheelchair. I Fought Back to Walk Again. Now, I’m the Reigning Mrs. New York
Note: PLEASE consult with your doctor before making any changes to your diet or medications. The material on this site is provided for educational purposes only, and is not to be used for medical advice, diagnosis or treatment.
This just made me ugly cry. There is so much truth in these few paragraphs that I have struggled to conceptualize into works over the last 6 months since my diagnosis. Lupus reared it’s ugly head, and it came for blood. The thought of having to explain to someone why I don’t want to go out, because going out means showering and getting ready, and even the mere thought of something so simple as cleaning yourself spirals your anxiety out of control bc you know how utterly exhausted it will leave you, sometimes for days. Thank you for this. It helps to know I’m not crazy, and people experience these things alongside me daily.