Lupus and Love

I occasionally started to think about love and being in a relationship after my most recent Lupus flare emerged full force. I had a lot to think about and new ideas to get used to. I was being admitted into the hospital almost every month, my kidney function had plummeted, I began to experience extreme brain fog for the first time, was extremely forgetful, and thought that I was going crazy. I contemplated finding a therapist to talk to before I had a breakdown (which I thought awaited me in my near future). Every time the doctors found something else wrong with me and gave me a new diagnosis, I would just roll my eyes, so sick of yet one more thing to deal with. One of the worst parts for me was when I began to have difficulty doing the simple things: I would have to sit down and take more breaks (even if I had just gotten up out of bed, walked to the bathroom to brush my teeth, start putting on some make up, break; make my hair, get my clothes ready, break; get dressed.. you get the picture). My hands and legs would tremble or shake visibly and was worse than it had been over a decade ago when I was first on Prednisone as well as other medications. I was extremely frustrated with everything that I had to deal with on a daily basis (the pain, feeling sick and nauseous, the ridiculous amount of water retention, being uncomfortable, having difficulty breathing, the fatigue, etc.) By merely walking a few steps from one room to another was enough for me to need to sit down to catch my breath as my heart raced and I would lose my balance often. I felt like my capability to do certain things for myself was declining and was afraid that this was only the beginning of my new reality. Sometimes I needed help getting dressed, or getting in the shower so I wouldn’t fall, many days I couldn’t prepare a simple meal, and for over a month I could not drive. I have always prided myself in being independent and would rather do things on my own, no matter how hard it may be than to ask someone for help. I wouldn’t want to inconvenience anyone, but I also am stubborn about having to admit that I cannot do something for myself and admit that I need help. I was depressed for a while because I did not know what the future held for me and wasn’t sure if my declining memory and feelings of going crazy was temporary or if it was something that I would have to deal with for the rest of my life.

One thing that I had to come to terms with which was difficult was my desire to have a baby one day. It would have been preferable to do this years ago but I knew I still had at least a few more years before I would remove this option from my life. I always wanted a family of my own and have several children but after being diagnosed with Lupus, I would have been content with one. My mom always told me that I could not have a baby because she was worried about my kidneys and knew at least one person who had Lupus and the same kidney disease that I have and she had a couple of children which worsened her Lupus. But I’m hard headed sometimes and didn’t want to listen to her. I just wanted a baby one day. I felt like it was a life experience that I didn’t want to miss out on. I wanted to be able to raise my child, see him/her grow up, teach him/her, and everything else that came with having one’s own “mini me.” 🙂 I wanted to be there and be a source of encouragement in times of need, to praise/ congratulate after every accomplishment. I wanted to experience having grandchildren. It was a whole world that I never experienced before and did not want to miss out on. One of my first thoughts after my first hospital stay was, “Who is going to take care of Mia if I die?” I was incredibly sad. No one could take care of or love Mia like I do. She would think that I abandoned her. At no point did it ever come to mind that my kidney function might begin to fail or that Lupus would affect my body and life like it was so long after the last scare. I realized that with my life, there would never be any guarantees. Yes, I could make it through this rough time and go back into remission but there would be no promises that it wouldn’t return. In this case, how could I know this yet still choose to have a child if there was higher possibility that I would leave him/her motherless earlier than I should?

I was “happy” that I was no longer in a relationship. Although I did feel alone a lot and it would’ve been nice to have someone that loved me to be there and let me know that “everything would be okay.” Even if we didn’t know that for sure, it would have still been comforting. I felt like because I was “sick,” “imperfect,” and was limited in what I could and could not do on a daily or moment-by-moment basis, I would become a “burden” on anyone who chose to love me. I didn’t want someone to stay with me just because they felt that was the “honorable” thing to do yet silently resent me for it. I didn’t want to take their life away from them because they had to cater to me and how I felt that day. And even if I had found that “perfect person” who loved me immensely and wanted to be there for me, didn’t mind it at all, and who chose to stay every single day, how could I hold them back from living a full life? A part of me felt undeserving. I did not deserve to be loved. I also felt like it would be selfish to ask someone for such a thing. It touched me to hear about other people with Lupus who have significant others who do love them and choose to be with them despite it all. That Lupus and all that comes with it did not frighten them away. To make myself feel better, I think that being single makes my life easier because there isn’t a certain someone that I need to talk to every day no matter how bad I feel; I don’t have to feel guilty about not being able to go out again; and if I want or need to be alone I can do so without having to worry about hurting anyone’s feelings.

Often when I think of subjects that are undesirable to me, I just stop thinking. I’m a master at repression. These topics never fail to resurface though. One day I was wondering why do I feel this way? That love cannot exist in my life as long as Lupus does? Why do I feel like I don’t deserve love? Or that a person who could still love me wholly even though I had Lupus does not exist in this world? I stopped thinking again so haven’t figured that one out yet. However I have come to believe that it is possible to find such a person to love me. I know that right now is not the time and that I need to work on myself first and learn how to deal with my disease. Or maybe I just need to be more at ease with this disease.

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