Sick Or Something Like It

As far as chronic illness is concerned, help can often be a strange bedfellow. We want help. We don’t want help. We know what we want/need. We don’t know what we want/need from others. At least this has been my relationship with help as it relates to my chronic illnesses.

For me one of the most helpful things has been the virtual chronic illness community that I have become a part of. Community building takes time and effort. While the internet has certainly helped mitigate this, there is still something to be said for good, old-fashioned, in-person communication.

But by virtue of our illnesses, we don’t all have that luxury.

Kerri of Six Until Me often shares heartwarming stories about interactions she has with other people with diabetes or those who are close to a person with diabetes. Quite honestly, her stories make me really jealous, because I can honestly say that I haven’t ever had the types of experiences she talks about in person. I’ve never been in line at Dunkin Donuts, or at the grocery store, and have lupus become the topic of conversation. (See also Laurie Edwards’ recent post - IRL: The Rare Disease Edition - at A Chronic Dose)

Why is this?

Well, in some ways, we spend so much time and energy trying to make ourselves invisible to others, to make ourselves seem totally okay, that it’s no surprise these kinds of interactions don’t happen. I think many of us who are chronically ill were quite independent pre-illness, which makes having to ask for help even that much harder.

If you don’t look particularly ill (whatever that means!), and you’re not talking about your illness (because there is a time and a place), how are people supposed to guess that you need help? I think that’s why so many of us tend to search for common ground and understanding from those who are also chronically ill. So much less needs to be said, and so much more is understood.

I’m lucky that early on in my immersion in the chronic illness blogging community that I met Maria Pfeifer through Rosalind Joffe. It’s the type of connection that once you have, you can’t imagine how you ever lived without it. I call Maria my “lupus mom,” but she is so much more than that. She is my friend, and there are times that I have confided in her and no one else. The thing is, I’m in Michigan and Maria is way over across the country in Oregon. I never would have met her if it wasn’t for the Internet. We try and chat in some way everyday, but we have met in person once.

I have participated in the yearly walks for lupus and rheumatoid arthritis for the past few years. And obviously, there are people there that have my illnesses, but for some reason, at least for me, these events never really build concrete connections with people. It’s more of a coming out party of sorts. More of I’m coming out so let’s get this party started as opposed to Let’s come out and make friends.

Recently, I was talking to a relative who told me that she does not view me as being sick. She said she views people that have mental illness or cancer as sick, but not me. I don’t want to focus on her definition of sick, I just want to focus on the fact that she doesn’t view me as such.

This brings about an interesting question. If you are chronically ill, are you sick, too? Is sick too much associated with acute illness? Is being sick all of the time just too sick to actually be sick? Okay, I’m getting bogged down here.

But the thing is, given that the definition of who is sick varies from person to person, what constitutes the need for help and giving help varies greatly, too. Again, asking for help is especially hard when you haven’t disclosed to people about your illnesses, or people perceive you as being totally fine.

I know that when I was first diagnosed, I had no idea what I needed from other people. When your life appears to be in shambles it’s hard to know at which point to start picking up the pieces.

But the point is that help is definitely a four-letter word. It’s hard to ask for, sometimes hard to get, sometimes hard to accept, and sometimes hard to repay. And this may be the crux for us who are chronically ill. Maybe we feel like we are a constant drain on people, and that we will never be able to give back all of the help that we have received from others.

I still have a hard time asking for help. But I think, and hope, that I have become better at and more gracious when I do receive help.

I think for many of us, needing help is the grim reminder that our pre-illness lives of fierce independence and reliance only on oneself are no more. But everyone will encounter a situation in life when they need help, sick or not sick. And let’s face it, since we aren’t masters of everything – although some might like to think so – we will all face situations that we can’t fix on our own.

Life is full of four letter words (including life). Help, sick, well, pain, love; there are thousands, the list goes on and on. Help and chronic illness can either go together like oil and water, or like peanut butter and jelly. Whether you choose to view help as a nasty four letter word is ultimately up to you.

Dear World, I know I’m Too Young For This, So Stop Telling Me So!

You know, rather than punch people in the face, as one of my previous posts suggested I want to do, I’ve decided to come up with a battle cry, and I think the title of this post is just about perfect.

It’s so annoying when I talk to people and they tell me I’m too young to be sick. I have lupus and rheumatoid arthritis, among other things. I’m 25 years old. Clearly I’m NOT too young for this.

Even a recent article in the Huffington Post backs up the fact that I am not too young for this. The article’s title says it all: “Preexisting Conditions Afflict Up To Half of Americans Under 65.”

Do people not think I am aware of my situation? I’m 25, but sometimes I feel (and possibly even behave) like I am 80 years old. I am aware that this is not the “normal” course of events that life should take. But it is my life.

I think people think they are being nice when they say this. I think in their heads it sounds like I’m so sorry this is happening to you. It shouldn’t be happening to you. You don’t deserve this. But to me, it sounds like I did something wrong. If I’m too young, but it’s still happening to me, then clearly I am the problem.

I don’t think these comments are made with malicious intent, but they are not made with much thought, either. Rather than saying nothing, people try to fill up empty space with comments that are equally empty. In this case, If you can’t say something nice, don’t say anything at all, doesn’t really work. But what about If you can’t think of anything intelligent to say, don’t say anything at all? Leave the empty space empty. Don’t say something just to fill air. Because these types of comments are worthless and sometimes even border on hurtful and offensive.

Better to let illness remain the elephant in the room than to try to come up with a comment that shows you clearly don’t understand the situation.

This statement is supposed to be some kind of consolation, but it’s not. In fact, it’s exactly the opposite. It doesn’t make me feel better about things; it makes me feel worse about them.

When people tell me I’m too young for this, I feel like saying: Wow, thanks for stating the obvious. And if this is true, THEN WHY THE HELL IS THIS HAPPENING TO ME?

This goes along with other unsolicited advice and opinions that healthy people give, and are so adept at giving. Or they ask questions like, “Are you really sure you actually have lupus?” As opposed to what, ass wipe, chronic constipation and pelvic dyssenergia? Oh wait, I have that, too! You lose. I’m just too awesome for words.

But seriously, my GI doc told me that I’m too young to be having the problems with my gut that I am. Well that’s just great. Even doctors fall into this trap. Sometimes they say the most unhelpful things.

So much of a chronically ill person’s time is spent dealing with healthy people and the stupid shit that they say and do. I think many of us try to educate those around us about how best to treat a sick person. This usually means treating us like we are people, and not acting weird or saying inappropriate things. This isn’t rocket science, people, it’s common sense.

Yes, I’m too young for this. So what are you going to do about it?

No more Miss Nice Girl.

"Hello, Lupie!"

At a recent support group meeting I went to, the leader asked us at the end of the meeting if any of us were offended that she refers to us as “Lupies” in her e-mails.

Personally, I’ve never been particularly fond of the term. But it doesn’t bother me, per se, that she uses this greeting. But apparently, it bothered someone. Because she received an anonymous complaint that someone found her use of the term to be offensive.

I cringe at how political everything is these days. Take, for instance, the recent Facebook meme that asked women to proclaim their bra color in their status update to raise awareness for breast cancer.

I admit, I did it, too. But then I read this article, and I saw the error of my ways. I hadn’t given much thought to the fact that many women who have had breast cancer can no longer wear bras. So in some ways, it made all of us tit-ified women seem like we were elevating ourselves above women who can’t wear bras or no longer have breasts.

There certainly is a pride that comes with supporting our own causes. But I think we do this, sometimes in detriment to ourselves, because we have limited the scope and range of our support. It is neatly and conveniently tied up in our specific illnesses. But as I have said many times before, regardless of the particular illness, chronically ill people, generally, have a lot in common with each other.

Lupus has been getting more attention lately, but the battle doesn’t start and end with lupus. Like many illnesses that impact mainly women, lupus remains the “bastard child.” And there are many other illnesses out there that get far less attention than they deserve.

When I was first diagnosed with rheumatoid arthritis and possibly mixed connective tissue disease, I remember being very dissatisfied with this. Neither explained the whole story, and I didn’t want to get lumped into a vague disease category. When I received the diagnosis of lupus, in addition to rheumatoid arthritis, it made sense. And it gave me a box to put myself in.

But I realize now that the box may not be all it’s cracked up to be. Because so many of us have many other illnesses on top of our primary ones. I now have Raynauds, and the jury is still out on a few other auto-immune issues. So in some ways, the “check a box” mentality is severely limiting.

Lately, I’ve been at odds with various people about the role that illness should play in my life.

When it comes right down to it, I think you have to own it. Sometimes owning it means making it more visible for yourself. And sometimes it means making it more visible to others.

If I don’t do it for myself, then I do it for all those 20-something women, who, in the prime of their lives, find themselves having strange and bizarre symptoms that no doctor can seem to figure out. And for those who start having joint and muscle pain after working out, which eventually never goes away. Because I’ve heard this story all too often from those I have met who have lupus.

I guess my point is, when it comes to support, healthy and sick people play very different roles. I have established that there are certain people in my life who are never going to make an effort to understand my illnesses. And really, the only people that get to hear everything, are my fellow “Lupies,” who can understand every part of this journey.

Believe me, I love the healthy people in my life, but sometimes they really just don’t get it. And there is a huge part of me that is grateful that they don’t, because if they did, it would probably be because they’re sick, too.

When I was in the hospital in October, my room phone never stopped ringing. I think it drove the doctors kind of nuts because every time they’d come in to talk to me, I’d be on the phone. And there was a big part of me that wanted to tell them that, that wasn’t my real life. And I knew that as soon as I was out of the hospital, things would be back to “normal.” The hospitalization made a lot of people take notice, who hadn’t before.

But it’s like when you spend months and months, or even years, planning a big party. And then the party comes, and it is over with in two seconds. There’s a huge letdown afterwards. Getting out of the hospital certainly wasn’t a letdown, but some people going back to the way they had acted pre-hospitalization, was.

This is all to say that we all make mistakes sometimes. Even those of us with illness don’t always say or do the right thing. Sometimes following the crowd supercedes common sense.

There is so much competition, even between groups that deal with the same disease. So who’s being helped in all of this? And who’s being hurt by the lack of cohesion? If it was the organizations that were being hurt, then they certainly wouldn’t be so fervently against each other. When it comes right down to it, it’s the patients that suffer the most, not from disease necessarily, but from a lack of readily available support.

I’ve wondered quite often why none of the doctors I’ve been to have had any resources or literature available. Sure, now my doctor asks me to sign up for research studies, but that’s because his colleagues are doing it, and who knows what he stands to gain.

I think a lot of doctors see this as being a single patient fight. Doctors don’t really care at the end of the day if you want to stand up and speak out about your illness experience, or if you want to find a group to support you. Doctors might support events, such as walks, but again, this is to promote themselves and the newest drugs. They speak about a cure, but to me that’s not much more than a good rhetorical device. If you use the C word, you can command a crowd for sure.

I have often wondered what it would be like if lupus and purple became the “thing” that was plastered on cereal boxes, yogurt containers, and a myriad of other products. What would it look like if lupus was widely available for public consumption? I honestly think it would leave a bad taste in peoples’ mouths. I don’t think they would be comfortable with it, and I don’t think I would be comfortable with it, either. This isn’t about endorsements, even though that’s where the money is.

Clearly, I’m skeptical of the efficacy of these kinds of politics. If a certain group can’t agree on what terms they should be using, there are going to be great rifts between people with the same illness. Like I said, I’m not 100% fond of the term Lupie, but I think if someone with lupus really takes offense to it, it’s because they haven’t owned up to their illness.

In many ways, the beast is not these illnesses. The beast is the ignorance of healthy people. The beast is doctors who don’t listen to what we’re saying. And unfortunately, the beast can sometimes be ourselves, losing what’s really important, in the battle for recognition.

I think all of the politicking proves that we have to stick together. I shouldn’t have to divide my loyalty between lupus and rheumatoid arthritis. My body certainly doesn’t, so why should my mind?

Making The Choice And Facing The Consequences

One of the many choices we face, as chronically ill people, is whether we should or want to be labeled as such. I, personally, have had several experiences with this.

The first is, as I have mentioned several times before, that Doctor C was at first hesitant to provide me with a diagnosis because of not wanting to “label” me.

More recently, however, more labels have been tied to my person. I have joined the ranks of students with “disabilities.” Doctor C had to fill out the “chronic health conditions” verification form, which was submitted to the office that advocates for students with “disabilities.”

Don’t get me wrong here. I’m certainly appreciative of the help and support that I have received from these organizations. However, an issue that we talk about often – disclosure – really takes center stage here. Not only do I become a person with lupus and rheumatoid arthritis, I also become seen as being chronically ill and disabled.

Obviously, since I blog about my illnesses, I have accepted the label of being chronically ill. However, accepting these labels in the “institutional” setting makes them even more real than they were before.

And there are, of course, pros and cons to being seen this way. So maybe for those who wonder why I waited so long to ask for help (nearly a year and a half of being sick and six months after my diagnosis), can understand that being “out” about such issues is both a blessing and a curse.

When disclosing goes well, or you share in a “safe space” with like others, which rarely happens, it can feel like a weight has been lifted off of your shoulders. I, for one, struggle on a daily basis with the fact that so few of the people I am around most of the time have no idea what’s going on. It makes me feel like a fraud. It makes me feel like I really do have something to be ashamed of, that I actively have to hide and conceal my illnesses for fear of being exposed as what I truly am – sick – and all of the questions about my ability that comes with it.

And part of this feeling is based on the fact that my department has not been entirely (if at all) supportive of what has been going on. One of many questions I ask myself lately is - do I want to continue in a department that does not support my needs? Do I want to stay in graduate school?

I had another meeting this week, with a different person from a different office. The meeting, itself, went well, but I am not really sure what the status is of things at the moment.

And as I spent that meeting telling my story and contemplating my need for voice recognition software and a backpack on wheels, I realize that there are choices that have to be made. And they are no different than the ones I make on a daily basis.

Early on in this experience, I was playing the role of a rebellious teenager, thinking about the allure of defying medical authority by not taking my medication. There was no rationale behind this thought other than to “stick it” to someone. Now, however, there is the question of whether I am better off taking the medication or not. And while the answer seems like a simple one, it isn’t.

Next week, I have an appointment with Doctor C, and it is clear to me that some changes need to be made. But I also know, even before having the options in front of me, that the choice will not be an easy one, because there is always something to be gained and something to be lost in this process. For instance, given the choice of prednisone or not, would I go for the prednisone again?

These are tough questions. But there always have been and always will be tough questions. I think sometimes my friends get frustrated with my indecisiveness about little things, like where to study or where to eat, etc. But the truth is, it’s only because I have to face the tough questions and make decisions, that when it comes to the little ones, it honestly doesn’t matter all that much whether we go here as opposed to there.

You know, having to have answers to the tough questions, sometimes on the fly, is both physically and emotionally draining. And lately, I have not been good at deciding when to take a break. Last week was crazy busy – I can’t believe that my last post was nearly a week ago – but on the other hand, I’m not all that surprised.

On Saturday, it wasn’t until my cell phone started vibrating in the other room that I got out of bed. And on Sunday, it wasn’t until the obnoxiously loud bells from the church down the street ushered me out of bed. For once, isolation was nice. The people that needed me or wanted to see me or talk, called or e-mailed me. I wasn’t rushing out to go anywhere, mainly because I didn’t have the energy to do so.

And Saturday was one of the most productive days I’ve had in a long time. But no matter how relaxed or “normal” things can seem, there are always reminders. I met some friends for brunch yesterday morning to celebrate one of the friends birthday’s. It was a pretty long walk and really cold out. By the time I got home, I was exhausted. So I fell asleep on the couch at about three in the afternoon. And while you might want to say, “But Leslie, there are people in the world who nap who don’t have chronic illnesses,” that’s true. But this is all relative. And I never was much of a napper before the chronic illness stage of my life.

There are many mornings where I stare at the prescription bottles lined up on the counter and think about how much easier life would be without them. On the other hand, I know if I take the cellcept more than three hours later than my usual time, I will end up with one of the worst headaches imaginable. The back of my head will pound and it will feel like my brain is going to explode.

So there are many choices that have to me made. And some are easier than others. Do I disclose and risk losing everything or do I stay silent and risk losing everything? Do I take my medication or do I tempt fate? Do I go to a get-together or do I stay in bed? Do I put on a brave face for nearly everyone in my life, when really, I’m in pain?

Yes, there are always tough questions. But it’s about opportunity cost, about calculating the risk and the reward. But sometimes, we don’t have the time or energy to consider the opportunity cost. And sometimes we don’t have the energy to think that hard and over-analyze everything (as some of us are wont to do).

Sympathy Versus Understanding

I did something unusual today that most people don’t do anymore…I pulled out (and cracked open) an actual paper/book dictionary… Because the distinction between understanding and sympathy has been bothering me for a while.

Sympathy vs. understanding? Is there a difference between the two? What do I desire from people?

Well, in order to answer these questions, I first have to know “officially” what the two words actually mean.

Sympathy…

“Sameness of feeling; affinity between persons or of one person for another”

“An entering into, or the ability to enter into another person’s mental state, feelings, emotions, etc.”

“Pity or compassion felt for another’s troubles, suffering, etc.”

Understanding…

“Mutual comprehension, as of ideas, intentions, etc.”

“A mutual agreement, esp. one that settles differences or is informal and not made public”

What I realize in taking myself through this exercise is that sympathy and understanding are deeply tied up in meaning. “Feeling”, “pity”, “compassion”, “comprehension”, and “agreement” are all words that find themselves in these definitions and I think, in terms of chronic illness, is assuming a lot (at least most of the time, that is).

How often do any of those terms describe how we feel from our interactions with the non-chronically ill?

I was recently having a conversation with someone who I had not seen or spoken to since before receiving my “official” diagnosis. Well, this person and I got to talking and their reaction was, “This is just shitty”.

And you know what? I agree.

And it was somewhat refreshing to be in the company of someone who could understand what a snag lupus and rheumatoid arthritis have put on my life.

And while we are on the subject…

I’ve come to realize that playing the role of the patient has put me at an advantage in my research. I think that being diagnosed with and experiencing what life is like with chronic illness has made me a more compassionate, and dare I say understanding, person.

Some might say that this is one heck of a price to pay in order to gain rapport when I am interviewing people. But it is not just that. It allows me to see directly into their world and to be acutely aware of what it means to look, feel, and act different, because I am acutely aware of this every single day.

Sometimes I wish our foreheads could double as car bumpers so that each day I could wear a new sticker on my forehead – an insignia that would tell the world how I am truly feeling on the inside – the part of me that very few people ever really get to see. And usually when they do, it is behind closed doors in whispered, hurried conversations, or over the desk at my doctors’ offices (and even then, not so much).

So what do I expect from people? That’s not an easy question to answer. But I guess it would be nice every once in a while for someone to acknowledge that my life sometimes stinks more than the average 23-year olds and that their life is made better by virtue of them not being ill. This seems obvious, but sometimes it would be nice if there were other people other than me wiling to admit it.
*****
“Sympathy.” Webster’s New World College Dictionary. 4th ed. 2000.
“Understanding.” Webster’s New World College Dictionary. 4th ed. 2000.