Tag Archives: friendship

Bikinis, Battle Scars, & Warm, Woolen Mittens

I’ve been writing this post in my head for months – since January! Somehow it never got written, and then new things kept happening that I thought should be included…  and suddenly it was November. Tomorrow is Thanksgiving, so I am determined to finally get this post written and online. I can’t think of a more appropriate time to post it.

Living with a chronic illness often means that we are forever bemoaning the loss of yet another person who has jumped ship from our lives. While this sentiment is often justified, I sometimes feel as if I spend so much time focusing on those moments that I forget to truly appreciate the friends that have stuck around and understand what my life is like. Sometimes this understanding is blatantly obvious in the form of gifts and such, but other times it can only be found by reading between the lines.

I don’t really send my blog link out to people that I actually know in real life very often. I pour so many honest, personal feelings into my posts that everyone knowing them would just feel awkward and like a violation of my privacy. Of course, that means that people only know what I’ve actually told them, and I’ll be the first to admit that it isn’t always very much. Still, sometimes I get off-hand comments from people I’m not close to anymore telling me that they saw something on my blog. That always shocks me, because I sent them the link such a long time ago, and we’ve drifted so far since then, that I didn’t even realize they still look at it. Likewise, I have an old friend that I barely even keep in touch with beyond a big group dinner or drinks when she’s in town for Thanksgiving. Yet a couple of years ago, she told me that when she heard about the lupus she spent a lot of time learning about it online. She’s nowhere near the only person that told me she looked into it, but she was the one that shocked me the most because I’d never talked to her about it even once.

Way back last January, I met up with a close friend for dinner. She made a comment that stuck with me. She told me that when she, and our third friend, say, “How are you?” That means that I can gripe about my illness, or I can just say that I’m fine. Or I can ignore it altogether and just talk about work or the weather, and all of those options are perfectly ok. Those three words are so disarmingly simple. Just “How are you?” We say them all the time, sometimes even to strangers. But we don’t always mean them. They’ve become an extension of the standard “hello” greeting. Or, even when we do mean them, sometimes we don’t really want all the details. Over the years, I’ve learned which friends need me to skip over the illness-related realities, because I can see that they’re visually uncomfortable.

The funny thing is, those sorts of statements and questions are so generic that it’s easy to miss the depth of their meaning. It’s not so much what the words are as what they represent. I love when I get texts from a friend saying things like, “Thinking of you in this turn of cold weather.. Hope you’re doing alright.” It’s comforting to know that the sender cares and is aware of how my body reacts to this kind of weather…. but she doesn’t require a definite response. I don’t have to muster up the right way to say, “I’m holding up ok.” or “Yeah, it really sucks.” At the same time, now I can do so if I need to, without feeling as if I’m mucking up someone’s day with whiny texts.

The weight gain caused by my medications was something that I really struggled with. Losing the weight was a huge struggle too. Now, even though I’m more or less satisfied with my weight, I’m still self-conscious about the stretch marks that all the weight changes left behind. Honestly, last summer was the first time I’d worn a swimsuit, let alone a bikini. I was a little uncomfortable with it, but I knew that I was safe with my friends. I still made an awkward off-hand comment about the fact that I try to think of them as something along the lines of battle scars. They didn’t bat an eye. All I got were grins, chuckles, and a new conversation topic. And, frankly, I doubt that they even remembered the comment, but their reaction was so natural that I stopped feeling awkward about all the marks.

When another close friend of mine went on vacation to Machu Picchu, she came back with gifts for some of her friends. She’d chosen unique gifts for each person, based on what she thought they’d like best. She handed me a pair of thick woolen mittens, commenting that she remembered how much I’d struggled with the truly brutal winter we suffered through last year. Sometimes I think maybe people just sort of space out when I start talking about things like how brutal winter weather is for me… and sometimes they really do. I see their eyes glaze over. It’s times like that one, though, that I feel like I’m about to cry. In a good way (yes, boys, there IS a good way), because those moments remind me that there are people who are paying attention and who actually remember and care about what I said.

The other day a friend commented that I didn’t really have anyone to talk to when I was going through the whole diagnosis process. She meant that I didn’t have anyone who’d actually been diagnosed with lupus to talk to, but my response was, “Well, but I had you.” and I meant it. There is something to be said for talking with someone who’s actually been through this stuff, but it’s also easy to underestimate the importance of the continued support of the people that have always been there for you. You expect that those people will be around for you, so you aren’t shocked except if they suddenly aren’t anymore.

It’s hard to tell whether these people realize how much these little things mean to me. Sometimes it’s hard to articulate, because I’m not sure that there are really words for those feelings of love, and belonging, and reassurance (yet those words just don’t seem to encompass the feelings completely either.) I would say that “friendship,” is supposed to encompass all of those feelings, but that just seems cheesy. So I will just say this: to those of you I mentioned in this post, and to the rest of you who are equally important (but I had to stop myself before I wrote an entire book,) this is me saying that I’m thankful. I’m thankful, and I’m very, very grateful even if I don’t always manage to say so. I couldn’t have dreamed up better friends had I tried.


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Filed under "...said WHAT?", advice/suggestions, coping, shout outs & thank you's

Loving Pride with a Side of Wistfulness and a Dollop of Frustration

Last night I attended a law school graduation ceremony. Not just any law school graduation – one of my very closest friend’s graduations. She’s been one of my absolute best friends pretty much since the day we met. We were 12. We’re almost 26 now. You can do the math. She’s essentially family. So when she asked me to attend her law school graduation, saying no never really occurred to me. How could I not go if she wanted me there? The fact is, I know how hard she’s worked to get there and I’m incredibly proud of her. Of course I am. How could I not be?

One thing I’ve realized about living with a chronic illness: it invades and taints every last aspect of your life down to your genuine pride in your friends’ accomplishments. As I sat there and listened to the keynote speech about all the things the graduates could achieve, I couldn’t help but think about the fact that my lupus and fibromyalgia took away my own professional degree. There is no longer a med school graduation in my future (despite the fact that I’m still paying loans for the time I was in med school). I wonder if that reality is ever going to stop stinging…

It can be so hard to watch as other people’s lives move forward while mine seems to be stagnant. It isn’t, not really, since I do have a job. But it makes me irritatingly repetitive as I try to emphasize the couple of impressive things about my job because it feels so inadequate compared to what other people in my life are achieving as their lives move forward and I’m stuck in a regressed career time point that I thought I was well beyond. One, in fact, that I specifically didn’t want and pointedly moved away from.

Of course, I didn’t say any of that. I hid it as well as I possibly could. I didn’t want my pain to take away from her big day. That wouldn’t be fair to her. I couldn’t bear the idea of her worrying about my sadness at the loss of my life plans when she should be celebrating the accomplishment of hers. There’s no reason why her mind would drift to the idea that i would be anything but happy for her, after all. And while it is inarguably not fair for me to have to hide my true feelings either, I felt it was the lesser of two evils.

Alas – (Ok so maybe that word choice is a little excessively melodramatic, so sue me.) – this is a problem that never really goes away as the lives of the healthy tick ever forward while we sit around in some, inaptly named as it is rather slowly sinking, quicksand.


Filed under coping, insensitivity/ignorance, introspection, rant

Dear Doctors, THIS is Who I Am…

This post was written for the Patients for a Moment blog carnival hosted by Diana Lee at Somebody Heal Me

The topic was “Who are you without your disease? What makes you more than just your disease? How have you adapted these aspects of your life so they’re not completely overcome by your illnesses?”

Dear Doctors,

To you, I am a medical record number and an attached diagnosis. You see me in lab test results, medical file notes, and medication logs. You see my signs and symptoms and what has been prescribed to treat them. What you don’t see is … ME.

Medicine is supposed to be about treating the patient not the disease, but the reality is that 15-30minutes to review how I’ve been, assess how I am now, and consider options for the future leaves little time to get to know me. So here is a little peek into who I am outside of your exam room:


… expect you to see me as more than my disease, even though I sometimes struggle with that concept myself.

… will drop you in an instant, even if it means waiting 6 months for another doctor, if I think you are condescending in any way. I am not an idiot, I know my body and I know enough about what is used to treat my ailments that I won’t stand for someone talking down to me. If you don’t listen to me, I don’t see any reason why I should have to listen to you.

…  am loyal to a fault.

… am ready to forgive, but never to forget.

… but not forever. I have zero tolerance for people who take advantage of me or take me for granted. I refuse to be in one-sided friendships.

… will never be found without a book near at hand. Of course, this is stressful for my wrists, so these days you’ll probably find me with my Kindle in my hand. My disease my make my wrists hate paper copy books, but I will never let it take away my love for reading.

… would do just about anything for the people who love me.

… love to travel, but almost never get to do so.

… don’t eat meat. No matter what you have to say about it and my nutritional (or malnutritional) state.

… don’t practice any religion, and don’t take kindly to people trying to convert me to theirs. As far as I’m concerned, the Dalai Lama has said it as well as I ever could: “Kindness is my religion.”

… you will probably never know it, but I write this blog. I do so because I know that there are thousands of people out there that don’t have access to resources any more than I did. I hope that I can be a resource for them.

… won’t eat the same thing two days in a row if I can help it. When it comes to food, I definitely need variety. Across different cuisines if at all possible.

… am still afraid of the dark, and not ashamed to admit it.

… love dogs, but hate rodents and will run out shrieking at the site of a cockroach.

… manage to handle the physical pain I live with, but can’t bear to see others suffer.

… have an unreasonable collection of shoes, clothes, and makeup. Yes, I know this. No, I probably won’t stop buying them.

… work full time. Ok, this one might be in your files. What might not be is that I don’t do it simply to be in defiance of your orders. I do it because I struggled to feel like I am a contributing part of my society, and I can’t handle that feeling.

… cannot be held responsible for punching you if you tell me that something is “all in my head” or “I don’t look sick.”

… am irrevocably hurt by betrayal.

… wish that there was a support group for people my age living with lupus or other similar diseases. I know you keep telling me that I need one, but I just don’t connect with the group that does meet.

… hate when you describe the mechanism of medicines to me like I’m a two year old when you can clearly see that I’m using pharmacological terminology. I hate that. Same goes for any aspect of my illness.

… work in clinical research, so I actually talk to breast cancer patients all day. And it kills me that I can’t actually tell them how much I understand some aspects of what they’re going through.

… hate talking to on the phone to anyone other than friends and family. If I can do something by internet or letter I will.

… of course, this doesn’t really work out, because I have to spend hours on the phone arguing with my health insurance provider.

… don’t tell anyone at work anything about my illness. In fact, I don’t even tell them that I’m sick. This means hiding my medical ID bracelet.

… attended medical school, and had to drop out because of my illnesses. And you didn’t. So I will always resent you for that.

… will not trust anyone until they have proven they are worthy of trust. This includes you. You have to earn it, just being a doctor doesn’t mean I’m going to bow at your feet and accept every word you say at face value.

… believe that an excellent bedside manner absolutely matters.

… think that some of you should never have gotten into medical school, and ought to get off your high horses. You’re not better than me just because it says “MD” after your name.

… and, finally, I have the most respect for doctors who actually ask about my life outside their exam room, instead of skipping that section of the medical history.

So the next time that I walk into your clinic, please remember, that THIS is who I am.


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Filed under blog carnivals/grand rounds, community education, coping, insensitivity/ignorance, introspection, rant

Best Conversation I Had This Week

This post is part of the Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. You can learn more about it here:http://info.wegohealth.com/HAWMC2012.

Today’s topic:

Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

*note: I had to approximate the conversation, since I didn’t have a transcript. I’m using “friend” instead of her name, since I didn’t get a chance to ask her if it was ok for me to post this here.

Friend: I just read your latest post about the time capsule. LOVE.

Me: Aw. Thanks!

Friend: But, you know, there isn’t enough of YOU in there. It’s all about your disease.

Me: Well, yeah, I guess … but it’s a HEALTH time capsule…

Friend: Sure. But you aren’t your disease! When people open up that time capsule, you want them to know about you and how you lived with your disease. Not just about the disease. You are NOT your disease.

Perhaps this seems like such a little thing, at least on the surface. Here’s the thing, though: those of us with a chronic illness seem to spend half of our conversations trying to explain this to people. (The other half we spend trying to convince them that we’re sick in the first place. Ha.) So when a friend actually comes out and says this, it’s like a huge victory. At least, it was to me. This conversation definitely made my whole week. It was nice to know that at least one person in my life realizes that there is more to me than my disease (even if I don’t always manage to).

(For the record, I did go make some edits to the time capsule post.)

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Filed under "...said WHAT?", blog carnivals/grand rounds, shout outs & thank you's, WEGO Health Activist Writer's Month