I have Lupus. I’ve had it since I was 22 years old. I’m 36 now, relatively stable health wise and in a committed long-term relationship. Things were not always like this, just two years ago I could only work part time, 4 years ago I could only work a few days a week, and 6 years ago I almost died several times and was unable to work at all because I was always in and out of the hospital for long periods of time. Through my journey my family has always had my back, my mother is a strong, passionate, fierce, Jamaican woman who believes in the power of holy oil, prayer circles, and beef soup. Despite having a very supportive village a lot of chronic illness involves intense feelings of isolation and loneliness. After a while I ultimately become accustomed to fighting my battles on my own, worrying about my survival on my own, and desperately trying to manage my pain on my own. But here’s the thing, when you are in a romantic partnership…. you are ideally, practically, and realistically not alone anymore. So, navigating away from my feral habit of survival in a solitarian crisis mode had to adjust. I’ve found that making this adjustment not only benefited me and my health, but it strengthened my relationship with my girlfriend and helped bring back parts of my humanity I’d lost to pain and sadness.
Lupus is the word used to define a defect in the human immune system that causes the body’s own antibodies to attack it. The body produces antibodies that would normally destroy disease and foreign material, but when someone suffers from Lupus those antibodies attack organs like: the skin, kidneys, lungs, heart, nervous system, and the brain. There are approximately 1.5 million Americans with Lupus. 90% of the people in this country who have lupus are women. It is 2 to 3 times more common among women of color.
The disease has taken its toll on me. My body is in ruins, it looks like it’s been to war, half the veins in my arms have been exploded by IVs. I have permanent scaring from hives and flare ups. I have achy joints and I suffer from insomnia because of the medicine I’m on. I’ve lost my hair, my sanity for a time, and I will never have a biological child. But the biggest thing the disease has taken from me is the parts of myself that defined who I was.
It is often said that the treatment for a disease can be worse than the effects of the disease itself. The steroids I take to keep my immune system in check have given me diabetes. Chemo has cost me my hair, my stomach lining, my bone structure, and some of my vision. Once in the middle of a flare my lungs filled with water and I nearly drowned in my hospital bed. I don’t’ cry… I rage. It was during a down time when I was feeling at my lowest that I met the love of my life.
She came in like the daylight and stayed to give me the sunshine I needed to grow. She brought art and kindness laughter and joy into my life. But most of all she brought an infinite well of patience. For the first year of our relationship I hid the realness of my disease from her. When I wasn’t feeling well or sick, I avoided her. When I was in the hospital I wouldn’t’ tell her. I had always believed that when faced with the reality of my disease a lover would leave and I would inevitably be left more alone than before I met them. But this wasn’t a normal woman. This was THE woman. Eventually we moved in together and there was no more hiding. One morning I woke up with severe pancreatitis. I was in so much pain I could barely walk. My girlfriend got me to the hospital and waited with me. She stayed with me in the hospital for a week. She watched my misery and resentment build and comforted me. She was more supportive than I could have ever imagined. She brought peace to my mind and comfort to my body. This hospital trip didn’t take as much out of me because she was there to help fill my spirit back up when it was depleted. I found that I was able to return to my normal routine sooner, my rehab at home was better, and having her around created a connection to my humanity and my community that I didn’t realize was being eroded with every lonely hospital stay and test. She helped me remember to be me. She brought me in from where I was hiding and burned the bridge back to that lonely wasteland. For that, for her, I am forever grateful.
I often use the term “feral” when referring to the way in which chronic pain has specifically impacted me. It turned me into something that was driven by reactionary instinct and my mindset was often wild. I was an angry rage monster trying to repress my agony and failing miserably .
Be honest, ask for support
In order to combat the feral change to my otherwise pleasant nature I had to first be VERY open and honest with my girlfriend. No more lying about how much pain I was in. No more masking my depression and discomfort. I had to clearly articulate what I was feeling as I was feeling it and ultimately admit I couldn’t do it on my own. I learned that defeat isn’t being honest about the truth of your pain, defeat is letting your pain warp your character.
Share your true experience
Next, I literally invited her into the room where it happens. She was in the ER with me being triaged, she was in my hospital room sleeping next to me, and she was in my bedroom at home helping me recovery. I was relieved to see that she didn’t see me as a damaged invalid, but as a tenacious warrior. Seeing myself through her eyes has changed my perspective on accepting help and being open about chronic illness and pain.
Lastly, and most importantly I made sure to communicate my gratitude and appreciation for her. Because even though she didn’t hesitate to step up and has promised to stand by my side through this entire unpredictable journey her love and partnership are not guaranteed. Making sure she knows just how valued she is, just how comforting she is reminds me that gratitude is a fundamental part of healing and the human condition. Communication, invitation, acceptance, and appreciate. These are the skills and tools I’ve used to integrate my love into my healing process and I’m thriving because of it.