On a plane ride to Seattle I found myself indulging in the young adult genre. Yes, I dabble in Harry Potter, but I generally do not read young adult books, or novels that my 9th graders love (we have different tastes believe it or not. Exceptions made for Forever 21). But I caved. I bought The Fault in Our Stars. And now I can say I
cried sobbed on an airplane. I totally attempted to hide my tears under my hair that I brushed ever so casually in front of my face, while I pretended to look out of the window – hooray for a window seat.
To summarize, in a sans spoilers way, The Fault in our Stars is a very touching (and conversationally unrealistic- teenagers do not speak like this) story about two youths who meet in a cancer support group and subsequently fall in love. And that’s where my summary will stop so you don’t despise me for ruining a possible summer read.
This book would have made Bear Grylls cry, but it really got me thinking. I do not have cancer, I have never undergone chemo, my disease has not put me in the hospital, but… in a similar fashion to our protagonist, lupus has created an emotional blockage for me.
Everything I’m saying from this point forward is not to suggest that everyone with a chronic illness feels this way so I can only speak to my own experiences. Disease had a funny way of making me feel undeserving of love- no one explicitly told me I did not deserve love, but it happened. This is an interesting conundrum as a serial monogamist, but fully tearing down walls has been a struggle. When I love, I love with all of my heart, but I come with endless apologies. Please see: exhibit a: endlessly apologetic for feeling exhausted and exhibit b: I physically can’t. So shut up.
Exhibit A: I’m not falling asleep because I’m bored, I’m falling asleep because I’m fatigued. So shut up.
Energy needs to be budgeted when you have a chronic illness. Choosing to to spend your energy is a task in itself. Food shopping, laundry, cleaning, and other simple tasks can expend so much of this priceless commodity. Prioritizing friendships, relationships, and myself (god forbid) is an effort that can only be truly understood by a person who experiences fatigue.
I was fearful of jeopardizing my relationships by saying no. I also hated the idea of using my “lupus card*”and being viewed as the sick girl. I perceived my inability to juggle it all was a failure rather than my reality. So, I would continuously wear myself into the ground because I cared more to follow than to lead. How can others love you when you struggle to love yourself enough to prioritize your own damn needs?
This took a lot of time to come to terms with- aka, last year. I needed to accept that I had lupus in order to live honestly with it. On the day that I woke up and made a vow with myself that I would prioritize my health I could feel a weight come off of my shoulders. And yes, I do break out the “lupus card.”
Exhibit B: I physically can’t move anymore. I’m serious- my hand could not close into a fist if I wanted it to. So shut up. Or face the wrath of a partially made fist.
Exhibit B falls into the category of physical pain that can accompany lupus. It manifests itself in me like rheumatoid arthritis (severe joint pain and difficulty moving as a result) and ultimate discomfort everywhere. Best way to describe the sensation: imagine your body is one big black and blue. Now poke that black and blue. That’s what I feel when I’m experiencing physical pain.
Let me explain myself like a wild animal- if I show pain it’s a weakness and I don’t want you to know that I’m weak so I’m going to go into hiding until I die or feel better. So far I have crawled out of my den and survived the pain every time. Go me.
What it comes down to is that I have a big sensitive heart for those that I love. I hate seeing them in pain. When they see me in pain, they feel pain, and as a result I feel pain. It’s a sick cycle. For years it was easier to put up an emotional concrete wall and not let people get close enough to me to pity me. They will say they don’t but their eyes tell another story. When people pity me I feel pathetic- I need to get over this. And when I have gotten very sick, I have needed help. Now I’m dependent on others- oh boy. This is the worst stage for me because I love my independence. I have needed help on every level from getting a glass of water to unbuttoning my pants. As a wild animal, I rather die, but as a human I succumb to their love and allow this much needed assistance.
My friends- It’s so easy to trivialize someone’s daily tasks and compare them to your own. I know getting a water is easy and that being tired when you’re a hard worker is a norm. This is why I have grown accustomed to having people struggle to understand SLE lupus and chronic illnesses in general. This is why having a relationship when you have a chronic illness is challenging for both parties involved. The truth is: Illness or no illness, you are fortunate to find a person who genuinely accepts you as you are. And we all deserve that.
I’m lucky to say that I have many relationships (family, friends, boyfriend) in my life that do not judge or question or push or expect and that take me as I am. I’m not sure I will ever come to terms with the fact that this is a truth- I think I may always have trouble accepting this. But like I said, ten years ago I rather go into an isolated space and hide my pain, fears, and disease entirely. Now I’m shouting this shiz from the rooftops. I have lupus. Deal with it… Or shut up.
*lupus card – this is an imaginary card that I pull out when I’m saying no. Used in a sentence… “I can’t to tonight. Don’t make me use the lupus card.”
I feel for you. Having relationships is hard when you have chronic illness. My wife has chronic illness, she had a friend with lupus, and I have a friend (for 35 years) whose wife has lupus. It is difficult to do anything many days and you are in a conundrum about it. You want to do those things but can’t. You don’t want to stop them from doing things but don’t want to be alone. You have to deal with people who do not understand it and you don’t have the time or energy to explain that this does not just ‘get better’ and this is what people tell you to do when they hear you are not feeling well ‘get better’ or ‘feel better.’ I choose to be with my wife when she is having problems rather than do anything else. I have been with her for 20 years (14 married) and I knew what I was getting into when we married. People with chronic illness are a special breed. Not always to be treated like fine crystal (might get punched in the throat sometimes) but not always to be treated like a ragdoll either. The trick is allowing that person to dictate most of the interactions because she knows her limitations far better than most people do. She has been living in this situation and she hates it so she will push those limits. She wants to do other things even when she knows she can’t and will probably cause an episode. She is still (probably moreso) worth loving and caring for. You go girl.
I want to acknowledge that I read you response and it meant so much to not only me but my boyfriend as well. He said he related to everything you said. I’m happy to hear your side of he story and I thank you so much for your thoughtful response. It’s nice to know that there are people on our team and they do it because the pros outweigh the cons. I know it’s not always easy. Thank you, thank you, thank you!