Post Soundtrack: Don't You Know by Gramatik
I read an article on The Mighty today written by a mother about her son. There is a quote from her article that I have adapted to fit myself.
"My disability is defining. It is not a side note. It is not a post script. In the story of my life, my Lupus will not be scrawled hastily in the margins nor will it be offhandedly mentioned in the afterword. It will be front and center, along with my strengths, my flaws, and my accomplishments."
In her article, she is discussing her son who has spina bifida. She is arguing against the idea that disabilities should be downplayed in importance by how we talk about it. I have heard before that I shouldn't let Lupus "define" me. She asserts that such a huge thing clearly plays a large role in defining a person, and I agree.
If I try to separate myself from my Lupus, to only perceive myself aside from it, I will forever be trying to hold back the ocean with my hands. It cannot be done. It is a part of me, a part that will remain with me the rest of my days. As depressing as that may sound, it is not evil unto itself. It is not a curse. It can be a blessing, it can be uplifting. It is what I make of it, but it is still PART of me. Irrevocably.
I am not saying that I am by any means proud of having this disease, or that I will flaunt it somehow as a badge of honor. It is just something I must overcome, that I must learn from, just like someone with asthma or a bum knee. It is a daily item to contend with, and it has changed how I view the world, and how the world views me. That can't be swept under the rug, ignored, or treated like something I'm taking onto myself that I shouldn't. I have every right to 'own' having Lupus.
I have seen an amazing amount of shame showered on Lupus patients who are struggling with their diagnosis... by other Lupus patients! They are admonished not to let Lupus change them, or to not let it keep them from doing something, or other such things. I'm sorry, but I'm not letting Lupus keep me from things I love... it simply is doing so whether I will it or not. It's a fact of life with Lupus. That doesn't mean I stop liking to do those things. It just means I can't right now. And I might not ever again. But that hardly is letting Lupus "win". Feeling upset over the disease is not letting Lupus "win" either.
I'm fine if others don't wish to define themselves by their disability or disease. I get it. It may be important for them to designate that separation between who they are and what they have. For me, I need solidarity of myself, a harmony of who I am and what I am going through. I have a son, so I am a mother. That can be hard. I have a husband, so I am a wife. That can be hard too sometimes. I have Lupus, so I am diseased. That is hard, sometimes extremely hard, but that is no less true or identifiable as me than being a mother or wife. The only difference is that I did not choose it.
So thank you to Mary Evelyn for giving me words that evaded me before. Now I have a firmer sense of what I feel and mean when told not to let Lupus define me. How I define myself is up to me and only me. And I have Lupus.