Wednesday, September 1, 2010

“I Love You, Don’t Touch Me”

“Oh what the hell she says
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doin’
Like I don't know now […]

And I don’t know what I’m supposed to do
But if she feels bad then I do too
So I let her be […]

And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now[…]”

- “Her Diamonds”, Rob Thomas

He wakes me up gently. I roll over so my face is buried in the pillow. He lifts up my shirt and gently rubs the ointment on my back. He pulls my shirt down and I turn back over. He wishes me “Happy Birthday” and kisses me.

Such tender moments in my relationship with my boyfriend make me think that there will never be misunderstandings, that such minor maintenance will prepare us for the potentially tough times that could lay ahead. But I know the fatigue – one of the peskiest and least understood symptoms – is something that baffles him as much as it baffles me.

Why, after working 30 hours straight to my four or six or eight, am I totally exhausted and he’s not?

But there are also things I don’t understand about him. I can’t imagine how it feels to be a doctor and lose a patient. And I want to be there for him, but I don’t know how.

So in some ways, we are even. It’s hard to watch someone you love suffer. But sometimes there is no choice, because there’s nothing in your power you can do to help the other person but be present.

You can empathize 98%, but there are some things that can’t be taught or learned. I can explain symptoms in ways to try and make him, or anyone else, understand, but at the end of the day, I’m the one who has lupus and rheumatoid arthritis, and only I know 100% how that feels; just as only he knows how it feels to take care of a patient, only to have them die.

Life is a funny thing, as it only prepares us so much for our own hand, so to try to begin to understand someone else’s is a feat in and of itself.

My boyfriend told me several months ago that he had read my blog. He told me that he cried, had to walk away a few times, and that there were so many times he wanted to call me in the middle of the night to talk about things I had written. He said that because he’s a doctor, he knew what lupus was, but he could never have imagined what it meant for my life. He told me that I’m one of the strongest people he knows, and stronger than anyone should ever have to be.

So mostly, there is just love. And the act of being in the same room together is enough. Because there are times when I just want to say, “I love you, Don’t touch me.” Even though that kind of feels akin to “It’s not you, it’s me,” it’s true. There are times when I’m in pain, and the slightest touch will make me wince, or I’m so exhausted that the thought of expending any kind of energy at all is unfathomable. There are times when love has to be enough because that’s all either of us can provide in that moment, because we are ill-equipped to deal with the other person’s suffering.

Never, in my darkest moments over the past few years, could I have ever imagined that I would meet someone like this, someone who sees me for me, beyond illness, and who is willing to stand by me, no matter what.

Because when you get sick, you think that you’re never going to find anyone to love you. And then you meet that guy. And you love him, and he loves you. And honestly, every time I think really hard about this, I cry. Because I’m so happy, and I can’t imagine what my life would be like without him. Because even the worst days are made just a little bit easier because he’s there.


  1. God bless you both! Wish you all the happiness and much more!!

  2. This post made me tear up and so does that Rob Thomas song (every time). I'm so happy that you've found a partner who is sp special. I am blessed to have found a man who supports me the same way - who, even when he can't really "get it, tries his very hardest....who also knows when to just be there. The similarities run even deeper because he is now in his third year of medical school and lately I've also struggled to completely understand what his days are like. At the end of the day, though, we could both never imagine life apart. I wish you both a wonderful life together - it sounds like you already have a pretty amazing start <3

  3. Such a beautiful piece of writing. It touches on one of my fears in a phase in my life where I .want. to meet someone, but am afraid of what it means for not only me, but for a partner. There are so many instances you just have to be strong, and people don't experience the first hand effects- no one can get as close to the maintenance and daily struggles and strengths, as a partner.

    Thanks so, so much for sharing. And, offering .me. some hope.

  4. Shweta - Thanks! :)

    Maya - Thanks. I'm glad to hear you have found someone, as well. I must confess that when "Her Diamonds" first came out, I really did not get it. But the more I listened to it, and put it in the context of my relationship, the more I realized how applicable it is. And now it is one of my favorite songs.

    Lizzie - You're welcome. And thank you!

  5. I am very happy for you. It is nice to have someone who makes an effort to actually understand. I hope this is permanent for you. You are both very lucky to have each other.

  6. I haven't heard the song, but the lyrics and your post touched me deeply. It brought me back to a time when love seemed impossible -- who could love, at that time, only slightly damaged goods (compared to now).

    When I met my now husband, I was struggling with health issues: rampant IBS (not yet diagnosed), women's health issues, depression, and migraines.

    Later, I developed atypical chronic facial pain, atypical odontalgia (constant tooth pain with the absense of any dental issues), and chronic fatigue (which might be fibromyalgia).

    At first, with each condition, he couldn't understand what was going on. Why the doctors' visits, the prescriptions. Over time, he has been able to emphathize, and not try to judge or push me when I am too tired or in too much pain to function fully. To understand that it's not that I don't want to do stuff, it's just that I can't at that point in time.
    While we have had our problems, difficulties and fights -- some due to my health, others not -- we have been together 28 years now, and married for 15. Someone can continue to love you, want you, need you despite your chronic illness or pain.
    Thx for such a heartful, emotionful, and powerful post.
    Good luck to you and the others who read your post in matters of the heart.
    Now, I have to go find Rob Thomas' "Her Diamonds"!

  7. "So mostly, there is just love. And the act of being in the same room together is enough."

    Leslie, this line is the most important line in your whole post to me personally. I tell my hubs often, "just having you here next to me is enough". Most who do not know chronic pain will never understand what it can be like in society, in private & in our heads. Some days are good, other are down right metaphorically suicidal. Thank goodness I'm a christian and don't believe in it but I understand the inclanation to think it's the only answer. Then, I look at my hubs, my kids my critters and I am confirmed in my choice to fight back with everything I can muster.

    I'm not near as eloquent as you are with words but I surely feel as any other person can feel. This post made me tear up. I've had Her Diamonds on my playlist since the song came out. It's the best dipiction I have found yet to describe most days, physically. Mentally, I've not found a song yet to hit it on the nail head. But it's coming.

    God bless your partner for allowing himself continued learning through you. You are the vessel and he will carry the knowledge into his profession. It will make him a kinder more compassionate dr. Blessings to you both. Tammy

  8. That's what happiness is all about. *hugs*

  9. Am happy to hear that most of the ladies commenting on this topic have found love. Unfortunately, am not one of them..I keep hoping that it will happen, but am not so sure that it will. I've been dumped twice, within the past 2 yrs of being too sick and tired (once when i was hospitalised) duen to my inability to participate in most activities.

    I have stopped dating as its too much effort. For now, am ok with that decision, although it can get lonely. But i'd rather be alone than be with someone who refuses to understand the limitations imposed by lupus.

  10. The words are so beautiful! It's wonderful to hear that there are people willing to stand by you when you're sick and ailing. I haven't been that fortunate but I still have hope!! I look forward to following your write beautifully!

    Hugs to you!

    Rosemary Lee
    Seeking Equilibrium