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.” πŸ™‚ 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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10 Comments (+add yours?)

  1. enissa
    Apr 27, 2014 @ 17:09:13

    I absolutely loved reading this! You figured it out in the last paragraph..Your self love will take you places beyond your imagination. Don’t give up hope..besides no one will be able to love you as much as the way you love yourself. trust me.fight against those doubts everyday. Eventually you will catch up to yourself and your mind body and soul will be one.It is a beautiful place to be in..You are almost there.

    Reply

    • mkingr
      Apr 27, 2014 @ 17:12:35

      Thanks. That makes me smile. πŸ™‚

      Reply

    • livingincurably
      Apr 28, 2014 @ 07:34:14

      I agree with enissa’s thoughts. You’re not there yet, it’s true. But know that sometimes the trick is not thinking through these things, but just taking action. Practice going on casual “just a snack” dates with anyone nice, and while on that date, practice talking about yourself outside of your Lupus. Beforehand, make a literal list of anecdotes, funny memories, etc that aren’t centered around your illness. And if the illness does come up on a 2nd or 3rd date, be casual about it – “Oh, I’ve got Lupus” with a dismissive little hand wave. Putting yourself out there by going on casual dates might just be the action, and not the thinking, that you need. Good luck!

      Reply

  2. tlohuis
    Apr 28, 2014 @ 17:12:13

    I believe there is someone for everyone. If you want it, it will be there when the time is right.:) Hope you feel better soon.:)

    Reply

  3. mkingr
    Apr 28, 2014 @ 17:46:47

    Thanks. You too. Let’s go fly some kites! πŸ™‚

    Reply

  4. lupusreallysucks
    Apr 30, 2014 @ 02:10:07

    I loved reading this. I recently got out of a relationship because it became apparent, among other things, that he would not be capable of dealing with this illness. Thing is, I got into the relationship when I was in remission. Even though I forwarned him and tried to prepare him of what it may be like when lupus rears it’s ugly head again, it is truly impossible to make anyone 100% understand what it is like. When it happened, the change in me was so sudden and drastic. He tried several ways to approach it and none of them really worked for either of us. It wasn’t all on him. Half the problem was my inability to deal with both lupus and the relationship at the same time. I felt responsible to somehow make it ok for him and he was trying to figure out how to assure me it was ok with him (when I think really it was overwhelming for him). It became the elephant in the room and the stress was too much for me.
    But I do hang on to a secret hope that there is a guy out there that has the self-assurance, steady disposition and patience it would take to just “go with the flow” whether I am sick or not.

    Reply

    • mkingr
      Apr 30, 2014 @ 12:49:23

      Sorry to hear about that. I wonder exactly what it is that makes it difficult for us as well in relationships. Is it mostly some sort of feeling of guilt? I know for me it is- at least partially. When I have been in relationships when I couldn’t do everything for myself, I didn’t want the other person to do everything for me, have to cater to me, or make sure that I was ok by asking me everyday or throughout the day how was I feeling. Sometimes I just wanted to be left alone and to hopefully forget for a moment how I felt and just “exist.” Their “caring” enough to ask just reinforced the fact that Lupus was “taking over” my life and that there was nothing that either one of us could do to fix it. I watched the movie Love and Other Drugs about a month or so ago when I was thinking about love and living with an incurable disease.

      Reply

  5. lupusreallysucks
    May 01, 2014 @ 01:41:34

    When I’m having a bad day/ week I too would rather be left alone. Maybe it is a sense of guilt. Sometimes I find the debilitating nature of this illness to be downright embarrassing. I’m like a wounded animal that wants to crawl under a bush and be left alone. I can get a little bitchy if someone keeps trying to β€œhelp” on those days. Other days I really do need their help and I hate that too. So, I end up feeling bad for the guy. I have concluded the best kind of guy for me would be one who is totally into something else, like a writer or a scientist. So on days when I want to be left alone he is perfectly fine doing stuff he wants to do. Maybe, for me, it’s about someone who can, more often than not, be happy being on their own but is also happy just having me around while doing it.

    Reply

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