Monday, January 26, 2009

You'll Never Walk Alone -- I Hope

I just got off the phone with a mom who has a very sick kid. I spent close to an hour trying to reassure her and share what little I know about her child's illness with her. But really, it was about trying to show her that she's not alone.

I am a lawyer, not a therapist, but there are an awful lot of sick people out there who just plain feel alone. I am in touch with several of them on a very regular basis. There was D, who called me whenever she felt scared that her traumatic brain injury was going to cost her her autonomy, that she would end up in a nursing home. There was SB, who emailed me several times a day for a few months, mostly because he had nobody to talk to about his illness. And this mom today -- she has nobody to talk to.

I can't tell you how often I get a call from someone with Crohn's disease who didn't realize until we spoke that I have the same illness, and who says they've never talked to another person with Crohn's disease before. These aren't all newly diagnosed patients, either. These are patients who simply never talk about their disease because they don't know how others will react. This is especially common with so-called "bathroom diseases" like Crohn's disease, but it's not all that limited.

I talk, I listen, I share my experience. I leave out some of the scary parts unless they're particularly apropos, but I'm trying to reassure people, and parts of my personal journey are pretty scary. And the fact is that a big part of why I do the work I do right now is because I can do it from home. I approach my spring/summer travel season with great trepidation because I know what the travel takes out of me. Truthfully, if I weren't doing this work, I might end up on disability -- I don't know. I don't tell people in crisis all that.

But what I do know is that, in the meantime, I spend a lot of time reassuring people, propping people up. Letting them rehearse conversations they need to have with their employer, their kids' school, their doctor. Letting them tell me their fears. I'm not a particularly good "people person" -- ask anybody who knows me well enough and long enough to have had a fight with me. I'm not very good at diplomacy.

But somehow, I got good at making people feel less afraid and less alone. I'm not sure how I got good at this -- it's not something I think about a lot. I just do it. And it works. I suppose I'm good at it because it comes from the heart.

This mom had me on the phone for about an hour. It was an hour added onto my day, an hour when I should have been doing something else. But then again, what could I do that's more important than to convince a mom with a very sick kid that she's not alone?

Next week, I will make payroll out of our savings for the first time in a long time. It scares me to think of how many months I will be able to get away with that before we run out of money and I have to get a "real" job or go on disability. It scares me for me, but it also scares me a whole lot for the people I serve. Where will they go?

When will society value the time I spend helping patients solve real problems AND, in the process, helping them feel less alone, less afraid, less vulnerable?

I hope it never comes to that, because getting someone the medical care they need, helping a kid get treated with respect in school, or helping an adult stay employed despite being sick all is of great value. But perhaps the most valuable thing I do is to tell people that they'll never have to go through the darkness alone ever again. Jennifer


  1. This comment has been removed by the author.

  2. Have you thought of starting a forum for people, they can read or post--whatever they want. You'd have total control. Some places like and (I'm sure others) are totally free.

    A lot of people have never heard of CD--sorry, couldn't edit so I deleted previously.


  3. You're good at making people feel not alone because you're not overly positive, and are honest about things. Too many advocacy groups (I'll be kind and leave the names out) sugar coat the conditions they exist because of. For these people, it is empowering to pretend that a horrible illness is really a blessing. For me, it is putting myself into denial.

    Patients hear, "Oh, I took this drug and it's great," or "Oh, I had this surgery and it's great," and they wonder if that's really true, or if people are just retroactively justifying their decisions.

    I'm sure many, many people appreciate what you do. I do. Whether that appreciation can be shown with money is another story. If we quantify appreciation by how much money people and governments give organizations, then we are one irredeemably screwed up country. I mean, we give billions to broke bankers so they can buy corporate jets, redo offices with lavish furnishings and award billions in bonuses to the very executives (they term highly talented people) who screwed up in the first place.

    Maybe that's going to change, maybe it's not going to change. We will see. I note that the President hasn't redecorated the Oval Office. Maybe he's trying to send a message--surroundings are just that, they don't matter, what matters is what you do in them.

    The reality is that most of the people you help are some combination of broke and broken. You may help them get back on their feet, but it will be years before they can repay you fiscally for what you do. If you're still around 5-10 years from now, I'm sure your coffers would be growing.

    The other unfortunate reality is that the chronically ill have a tendency to exclude and be exclusionary amongst themselves. I won't name names, but I know this happens all the time. People are so frustrated by being left out of society due to their illness that they create their own exclusionary little clubs as an aphrodisiac.

    This filters down to what you do. Some chronically ill people who are insured are tempted to blame the uninsured for their problems, and tempted to say, "These people didn't do a good job of taking care of themselves, they were lazy and don't deserve treatment." The fools who believe that, and sadly there are millions of them, are never going to donate to your organization.

  4. How can you be an advocate if you aren't a lawyer or doctor? Just a secretary...or can you?


  5. @RR,

    We live in a democracy. Anybody can be an advocate if they decide to speak up and speak out. You'd be surprised who will listen to you...