My Story On HealthCentral

I’m so excited to share with you My Story, which is being featured on HealthCentral.

You can view the multimedia story here:

http://www.healthcentral.com/storytelling/mystory/entry/56ac223a4ee9b1a6393515f0

Can Subscription Services Be Helpful For Chronically Ill People?

For those who aren’t familiar with subscription services, there are online companies that you can pay for a subscription for a given type of item like food, makeup, and clothes.  The items are sent directly to your door.  There are so many subscription services out there now that you are bound to have heard of one them.

I have used two subscription services – Hello Fresh (food) and Stitch Fix (clothes). 

***

Hello Fresh

Hello Fresh is a subscription program where you get meals sent to you.  To be clear, YOU have to cook the food.  They send you recipes and basically all of the ingredients needed for each recipe and you make the meals yourself. 

This is great for people who may know how to cook but never know what to make.  For chronically ill people, this doesn’t exactly help if you don’t have the energy to cook.  But if you have a spouse who can cook, this saves time by not having to go to the grocery store. 

They have both a classic box and a veggie box.  You can get three meals for two people or three meals for four people.

I got a Groupon for this, so it cost me $20 for three vegetarian meals for two people, which would normally cost $59.

Overall, it was a fun experience getting to try random recipes.  We knew exactly what we were eating for three days, which was nice. 

At $20, this was a great value.  I am not sure how much of a great value it is at $59, other than the convenience of it.   At $59, it basically averages out to $10 a meal per person.  While that’s cheaper than eating out, we definitely can make meals on our own that cost less than that per person.

Like I said, this can be a great option for chronically ill people, depending on what your specific situation is.

The only thing you have to be careful of is that when you sign up, Hello Fresh automatically schedules your delivery for once-a-week.  You can change it to twice-a- month or you can deactivate your account.  But if you’re like me and you just wanted to try it once for fun, make sure you change the schedule – that is – unless you fall in love and want to receive a new box of food and recipes every week. 

Stitch Fix

Stitch Fix is a subscription service that sends you clothes.  You pay $20, which is applied to any items you buy – so if you order and don’t end up buying anything, you are out $20 – and you get five different items.  If you end up buying all of the items sent to you, you save 25%.  They provide a return package that you can use to send back any items that you don’t want.    

If you’re like me, and you are prone to getting stuck in clothes in the fitting room of stores because RA limits the range of motion in your arms, this takes that anxiety away. 

My first fix was a total bust.  None of the items fit right nor did I really like them.  Stitch Fix was nice enough to send me the next fix for free (they gave me a $20 credit), which was awesome.  Based on the things I really liked, and for the price, it made sense for me to purchase all of them the second time around.

They sent me a pair of skinny jeans.  I have been wanting a pair for a long time, but I hate jean shopping.  I won’t do it.  So even though the jeans were pricey, it was worth it to me because this is the only conceivable way I see getting jeans.  Plus, I’m petite, and lengthwise the jeans were perfect, which is saying a lot. 

I also got an amazing asymmetric sweater that can be either causal or fancy, and I have been wearing it everywhere.  It’s made of a really soft material and is heavy enough to wear as a spring jacket.  It also just looks really flattering. 

The clothes, even though I said I wanted the cheaper, the better, are pretty pricey.  But again, you are paying for the convenience of not having to go to the store, not having to potentially get stuck in an item you don’t want in a fitting room, and you can be upset in private if none of the items work for you.

I think the best advice is to provide a lot of feedback about what you are looking for.  You can put Stitch Fix into Pinterest and see what other people have gotten.  You can pin things and provide Stith Fix with the link, and they can send you items very similar to, or sometimes even the same as, the ones you pinned.  At the very least, they get a better idea of what styles you like.  Not to mention, there is an extensive profile that you fill out for them with your sizes and they provide groups of clothes that you can rate by what you like and don’t like. 

The other nice thing about Stitch Fix is that you can schedule them whenever you want and aren’t married to getting one every week or on a specific schedule.   

This is a great service.  I can’t say enough about it.  The quality of the clothes is high, the stylists really listen to you if you provide them with feedback, and you don’t have to leave your house to shop.  Dangerous, I know.  

If you’re interested, please use the following link –

https://www.stitchfix.com/referral/4484877 – as I get referral credit on my account.

***

I hope that this post has been helpful.  I know that many of us chronically ill people don’t have a lot of disposable income.  But subscription services may just be worth the extra money for the convenience of it all.    And I know that many chronically ill people look for ways to make life easier.   These services definitely do that.  Why do something that someone else can do for you?    

Check Me Out In The Latest Edition Of Women's Health Magazine

I'm quoted in this month's issue of Women's Health Magazine, in an article on chronic pain.  You gotta love when, in writing, someone says your "feelings are backed by science."

On newsstands now...

 

Check Out My Post On Rheumatoidarthritis.com

http://www.rheumatoidarthritis.com/tips-and-advice/coping-after-ra-diagnosis

Check Out My Post About Finding My Niche In Higher Education On PhD(isabled)

http://phdisabled.wordpress.com/2014/07/01/finding-my-niche-despite-chronic-illness/

Check Out My Post About Chronic Illness And Higher Education On GradHacker

http://www.gradhacker.org/2014/06/04/true-confessions-of-a-chronically-ill-phd/

Adventures In Blogging: WEGO Health Webinar And “Chocolate & Vicodin”

I had a few blogging-related experiences last week that I wanted to share.

I had the opportunity of being an audience member of the WEGO Health Webinar “Navigating Your Health Narrative” about health blogging, and I also read the book “Chocolate & Vicodin,” written by blogger Jennette Fulda.

I had never taken part in a Webinar prior to this one.

On the Webinar panel were bloggers Lisa from Brass and Ivory and Jenni from ChronicBabe, and a representative from WEGO Health. They addressed topics from starting a blog, why to blog, finding your blogging voice, disclosure, promoting your blog, community building, ordering your blog, and blogger burnout.

For me, many of the topics were things that I already knew about, like starting a blog and why to blog.

Both panelists talked a lot about social media, utilizing Facebook, Twitter, and other web resources. I had never heard of Networked Blogs, as part of Facebook, but it is something I am looking into to streamline my blog posting to Facebook.

Something else they talked about that I hadn’t considered is an editorial calendar in order to plan what you are going to write about. I have had a bit of experience with this in writing for Health Central, but not for my own blog. Both Lisa and Jenni expressed not really relying on editorial calendars, and leaving a lot of room for “creative freedom”.

There are definitely dates I commemorate by posting, but for the most part, I just write what I want, when I want. And I think for my personal blog, this works well. I think it would take a lot of the fun out of blogging if I tried to stick to a schedule. I have enough deadlines with graduate school to keep me disciplined.

Another thing they talked about was keeping conversations positive. One thing I have noticed is that the tough stuff tends to get more play than the good stuff. Maybe this is because the good stuff happens so infrequently. Anybody have thoughts on this?

Finally, Lisa and Jenni warned about blogger burnout, which tends to happen in the first few months of blogging. I think you have to pretty quickly find your niche and facilitate communication with other bloggers. For me, once I started getting comments and knew there were people out there actually reading my blog, I was hooked. Three years and counting…

*****

 

What drew me to this book was the title, “Chocolate & Vicodin,” and the cover art.

In a very brief summary, the book is about a woman who gets a headache that won’t go away. While I can honestly say that I can’t completely imagine what this would be like, although headaches are a big lupus symptom of mine, I did find some commonalities…

“I realized I had skipped becoming my mother and had gone straight to becoming my grandmother” (214).

Wow, I can so relate to this. I skipped feeling like a 50 year old to feeling like an 80 year old. And my 80+ grandma and I swap arthritis war stories all the time.

“All I could do was swallow the pills and say a prayer” (215).

I can really relate to this, too. It’s no secret that medication working for me is a hit and miss type of thing. All I can do is have confidence that my doctors are doing the best job they possibly can, and that I do my part as a patient, taking my medication diligently, even when it seems like it isn’t doing much, and making sure that I voice concerns about medication efficacy to my doctors.

“Pain was lonely. I wanted someone to stand next to me and share my view of the world” (248).

Need I say more?

”Pain and suffering were siblings, similar but not the same entity” (267).

She’s right. Pain and suffering are related. I think people think that pain is objective and suffering is subjective, but I’m not sure that’s the case. I personally think and pain and suffering are both subjective.

Anyway, this was a good read. There weren’t as many commonalities as I expected, but it is another story of a twenty-something woman facing chronic illness head on (no pun intended).

*****

(Fulda, Jennette. Chocolate & Vicodin. New York: Gallery Books, 2011)

A Personal Commitment To My Readers

I am grateful for the expanding opportunities I am being offered, and have entered into a partnership with HealthCentral.com. I am looking forward to seeing how the relationship develops.

That said, this blog, and the readers of this blog, mean the world to me. You have all been there through good and bad, with encouragement and advice. You’ve allowed me to spout off and rant, and ultimately, to grow into my illnesses.

I truly don’t know where I would be without this blog or the readers of it. So please, continue to support me, and stay on this journey with me.

I am not leaving this blog behind. I intend to keep this blog going. But I am also excited to be writing new material for a broader audience, although I’ll be focusing on rheumatoid arthritis for Health Central.

You can read my first post here.

And I have added a tab at the top of this page that will provide links to my Health Central posts.

As always, thanks for reading!

L-I-F-E

I was a little late, and didn’t end up submitting something for the latest edition of Patients For A Moment (PFAM), which was hosted by Selena at Oh My Aches And Pains. Selena’s question for this edition was, Love? Hate? What are the four letter words you use to describe your life with chronic illness?

Despite the fact that I didn’t make it in time to submit, I thought this was a really interesting question, and wanted to take a stab at answering it.

So, if I had to come up with a four letter word to describe illness, it would be life (L-I-F-E).

First of all, illness is a fact of life. At one time or another, everyone becomes ill. For some, this isn’t until they are old and in their final days of life. For others, like me, it happens in our “prime,” which is definitely sucky, but can also be character building and teach us things we never even knew about ourselves.

In a perfect world, illness wouldn’t exist. No one would have to go through the things that so many of us do. But the world isn’t perfect, and neither are we…

I also use the word life because illness has had a broad ranging effect on my life, both absurd and profound. It has caused me to have innumerable identity crises, but it has also forced me to show strength that I never knew I had. You never quite know what you’re made of until you’re called upon to face a situation that shakes you to your very core.

Whatever I was before, and whatever I intended to be after, illness has become inextricably linked with my identity and who I am as a person. Illness is not all of me, but it is a very big part. And I have to be realistic. Illness is a part of my life now. That’s just the way things are.

And illness is a part of life in that it doesn’t just affect the sick person. The people in my life have been impacted by my illnesses, as well as I have. Probably not to the same degree, but illness is one of those things that shows people’s true colors – those who truly love you will be there, even if, especially if, you are ill. Those who don’t, won’t.

Illness has also taught me the capacity to feel (F-E-E-L) in a deep way. I think I’ve always been a caring, feeling person, but illness amps up the senses. Good feels better and bad feels worse. But at the end of the day, I know that I am not numb to the world around me. I feel joy and pain; I am a part of it. Because that’s life…

I guess I might use another four letter word, suck (S-U-C-K). Lately I’ve become very adept at telling things (and people, but not to their faces) to “suck it.” Very mature, I know. Because the truth is, illness can suck. It can also suck the life out of you, physically and emotionally. But rather than concentrate on the negative aspects, I would rather focus on the fact that despite everything I’ve gone through over the past few years, and the fact that things do suck at times, I’m living. I’m alive.

And with every day more I spend on this journey, I’m learning that illness and life are not diametrically opposed to each other. There can still be life in the face of illness.

So, for better or for worse, this is my life…and I’ve only got one…so I’ve got to live with what I’ve got…

On a side note, be sure to check out Selena’s edition of PFAM. And I’ll be hosting PFAM on February 24th. You can base your posts on the following questions: What’s illness got to do with it? What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

A Slave To Medical Technology?*

A few weeks ago, I took this bag of change I had to a coin counting machine. I’ve had the change for maybe a year, and figured I probably had about $70 worth. Turns out I actually had almost $160 worth of change. Change that I take out of my wallet everyday and save, because I don’t like carrying it around. Basically “found” money.

Anyway, rather than save that money, I decided to buy an IPod Touch. My aunt and a friend’s husband had both recently purchased one, and it looked pretty cool to me. It’s not something that I absolutely needed, but it only ended up costing me about $30 because of the change I had turned in.

I never thought I’d be a slave to technology, but this thing is awesome. Aside from making me more hyper-organized than I already am, the best things are useful and cheap (read $.99 or free) applications that are useful to those of us with chronic illnesses.

(Check out my pictures of screenshots from ITunes on my computer…)

I’ve downloaded a medication tracker, iMedication, which allows you to put in the name of the medication, the dosage and frequency, and the prescription number and when it is due to run out. It keeps all of your medication in a very convenient list right at your fingertips. Much better than my handwritten index card that I keep in my wallet, which has to be re-written every time a dose changes.

I’ve also downloaded MyEmergency, an application that allows you to keep all of your personal information, plus next of a kin, allergies, a list of the names of the medications you take, medical conditions, doctor details, and insurance information.

Another great application is My Pain Diary Lite (Lite as in free). This allows you to rate your pain intensity (on a scale of 1 to 10; no silly smiley faces here), the type, location, and trigger of the pain, and the remedy. I think this is a good way to more accurately keep track of flares, which I haven’t been very good at doing. It’s also good for people who keep a paper pain journal.

On the whole, I haven’t found one application in which I love all of the features, that’s why I have several separate ones. There’s also Medical Records and My Health Records, which are both free. I just downloaded those and am going to play around with them.

Obviously, there are going to be some things that won’t get completely digitized any time soon, like prescriptions and lab requisition forms. But on the whole, I’m really impressed with what’s out there, which seem especially useful for people who have complicated medical histories and health issues.

Although I guess there’s always the question of whether you really want to put all of your information in one place because 1) someone else could easily get their hands on it, 2) what happens if the IPod breaks, and 3) what if you don’t have it with you when you need it? Also, I wonder how doctors these days feel about their patients using such technologies. Do they streamline the doctor-patient encounter or make it more cumbersome?

Along with fancy IPod applications, there are a plethora of Internet sites, some more social network-y and free – like Cure Together and Medpedia - and some more practical and expensive, like Minerva.

If you know of other sites/programs that you particularly like (or don’t), leave them in the comments. I’m interested to know peoples’ experiences with technology as it relates to chronic illness. Do you partake or opt to stay away?

* I have posted about these product out of my own personal experience with them, and not because I have received compensation, financial or otherwise, from these companies.

Where Am I Going?

I’m heading off to California for a conference and then Oregon to visit my aunt and uncle. This is my first time on a plane alone. I actually haven’t been on a plane in seven years. And this is the most traveling I’ve done since I was diagnosed with lupus and RA.

In the picture above, you can see that I have all of my meds, Biofreeze, and hand sanitizer in an airplane-approved bag. Plus I found a mini version of my pill organizer, a note card with all my medications and doses, and the dreaded masks (I love that the instructions are a mile long, and the masks say warning across the mouth). So much for being inconspicuous…

I can only imagine the stories I’ll have to share when I get back!

While I’m gone, I urge you to check out the talk show, New Way RA, and also the Arthritis Foundation’s “Show Us Your Moves” contest at the Lets Move Together campaign site.

Extra, Extra! Read All About It!

Here’s a quick post about what’s new:

1. Check out my guest blog for National Chronic Invisible Illness Awareness Week.

2. “Patients for a Moment” is up at “Everything Changes”.

3. “Grand Rounds” is up at Captain Atopic.

4. And finally, I’ll be hosting Lisa Copen as a guest blogger on Monday, August 3rd.

“Patients For A Moment,” Third Edition

The third edition of “Patients for a Moment” is up at Duncan Cross. Be sure to check it out.

Next week it will be hosted by Kairol Rosenthal (Everything Changes). You can read of Parts I and II of my review of her book.

I’ll be hosting “Patients for a Moment” on September 9. More on that later!

“Patients For A Moment,” Round Two

The second edition of “Patients for a Moment” is up at Duncan Cross. Be sure to check it out.

“Patients For A Moment”

I wanted to let you all know of a new blog carnival, “Patients For A Moment” (PFAM), that is up at Duncan Cross. PFAM is a patient-centered/oriented blog carnival. Duncan suggests that the benefit of providing an outlet for patients is, “The more we’re able to engage and communicate with one another, the better off we’ll all be.” I think that’s totally true, and Duncan has done an awesome job! I’m also honored, but a little embarrassed, that Duncan has given me “pole position” for my post, “The Continuum Of Disclosure.” So be sure to check out the first edition, and consider submitting for the next.

The Continuum Of Disclosure

Lately I’ve encountered several people who have asked me to be candid with them about my illness experience. While this has been a welcome change from keeping a lot of the gory details to myself, it has also been something that has caught me off guard.

I sort of have to look at these people and say, “Are you for real?” Like, do you know the mess you’re voluntarily walking into? And are you absolutely sure you want to make that move?

On my blog, I would consider myself to be fairly open about my illness experience and the feelings and emotions that come with it. I’ve been working with some great people at the health center on campus to try and raise awareness about chronic illness and provide resources for students who may be suffering in silence. The result is a web page that was released this week:

http://www.uhs.umich.edu/resources4chronic

You can find my story there. And this doesn’t bother me – I wouldn’t have put it out there if I didn’t want people to read it. But I think if you talked to me in person, you would see that the way I talk about illness, generally, is very different.

And recently, I decided to import my blog posts to Facebook as notes. For me, I figured that this would help get some friends connected who wanted to follow but not subscribe (or whatever). The unexpected consequence of this move is that many others have started reading, as well.

I never realized that simply putting a link in your info doesn’t do much, but when you are flashing information in people’s faces, they actually start to take notice. Oops…

The thing I’m realizing is that disclosure works both ways. There is a level of disclosure I feel comfortable with, and then there is a level that the other person feels comfortable with. And admittedly, sometimes those two don’t map onto each other. And this is where the trouble lies.

There are the people, who no matter how many ways you explain, are never going to get it. Then there are others who will do research on their own, learning as much as they can so that they can speak the same the language.

To my mind, there are four general “discourses of disclosure”:

1. “I’m sick”
2. “I have such and such illness”
3. “I have such and such illness, and this means…”
4. “You asked for all the details, so I’m going to give them to you”

For me, personally, I find number one to be kind of lame. When you say that, people think you have the flu, and it just causes problems later. If I can’t tell people that I have lupus and rheumatoid arthritis by now, I’ve got other problems than illness that I should probably be dealing with.

I think, together, two and three make up a comfortable middle ground, at least for me. If I do mention more than just saying I have lupus and rheumatoid arthritis, the party line is something like, “Lupus affects your organs and rheumatoid arthritis affects your joints. It’s a pretty awesome combination. I highly recommend it.” Yes, I’m glib. But these days, that’s how I roll. If I take it all too seriously, I just get depressed.

Number four is, admittedly, used sparingly, and usually is only utilized when someone requests such information. I would never spew all the detailed garbage about my illnesses without someone asking first.

Why?

Because it ain’t sexy – and it isn’t always easy for me to talk about.

I think there is a level of maturity that comes not only with being okay with others self-disclosure, but being okay with it from yourself. Admittedly, my 20-something friends don’t want to hear about these things. I wouldn’t have either, until I got sick.

And it’s scary to talk about pain, and to try to explain to someone how you really feel when you are at your worst. It’s scary because the instinct is to pull back, and not offer too much, which in the end usually means offering very little.

But the one question I have a really hard time answering regards what I do when the pain is unbearable? I mean, there are practical things like taking a hot bath, or putting numbing gel on the area that’s in pain (or taking ibuprofen if you’re not on any other steroidal compound). And then there are things like contemplating breaking mirrors…or worse…and those aren’t the kinds of things that most people want to hear about. And they aren’t thoughts that I’m proud of and share readily.

Observe:

I went shopping with a friend this week. And after a few hours of carrying a light load of bags around the mall, my shoulder hurts like crazy. It feels like someone is picking me up only by the small amount of skin at the top of my shoulder and pinching the nerve, and it feels like someone is running the bone through a paper shredder. When I’m home later trying to read, I can’t hold a book with that arm. When did the mall become a dangerous expedition for my body, and not just my wallet? When did being able to hold a book become a small luxury?

Usually I suffer in silence. I don’t try to paint the vivid picture that I just did above, verbally to anyone. Would anyone understand? Part of me thinks gosh, I really hope they don’t. Because inevitably, the people who are exposed to number four, the purge, are also sick, or have had first hand experience with someone who is/was sick.

Life, especially life with illness, is a learning curve. I am constantly learning to adapt to life with an unpredictable, ever-evolving set of illnesses. And it’s not easy. And finding people who want to know and understand is rare. So I’m realizing that when I find those people, I can’t be quick to let them escape. While it’s easier to hold back, and provide the requisite, I’m fine, it’s liberating to have that go-to person who you can tell that you feel like shit, and they’ll help you through it.

What characteristics, aside, usually, from personal experience, do such people have? I’m not sure. I can’t say what makes some people stay when things get bad, while others run the other way. While I think that empathy and compassion are part of it, I don’t think it means that people who can’t handle the details are lacking such qualities. It simply takes a special kind person, and I hope that such people, whether they are in your life or mine, know the good they are doing and the invaluable outlet that being able to talk about such issues provides.

(And don’t you just love my stick figures? Wondering why I haven’t drawn before? Because my lack of drawing ability is rather disgusting…)

Grand Rounds Is Up At HealthBlawg

This was the first Grand Rounds in awhile that I’ve submitted to, and David Harlow at HealthBlawg makes an astute observation about my post, “Illness As The Ultimate Trump Card,” and not being able to “go home again.”

Seems to be the story of my life these days…

Anyway, check out another fabulous edition of Grand Rounds at Health Blawg.

“It Does Not Say Lupus On My CV”

I was asked to write a guest post for lupus awareness month by my friend Maria over at My Life Works Today. The post, entitled, “It Does Not Say Lupus On My CV,” will not be posted on my blog, so be sure to hop on over to Maria’s blog to read it.

And while you are there, be sure to check out all of the other guest posts, which address various experiences with lupus.

Thanks Maria, for letting me be a part of your efforts!

Town Hall Speech

What follows is a speech I gave tonight at a town hall meeting about disability and access put on by the Graduate Employees Organization (GEO) Disability Access Committee, of which I am a member. As I indicate in the speech, this was the first time I have spoken to a group publicly about my illnesses…

I graduated from the University of Michigan in April of 2007 and was set to start the Sociology PhD program in the fall. While I thought that there was nothing to possibly derail this plan, I was very wrong. Throughout my senior year of undergrad, I had repeated strept throat and pink eye infections, bizarre stomach bugs, and the telltale muscle and joint pain – at first only after I worked out – then eventually, the pain never went away.

While I was able to start graduate school in the fall of 2007, my whole world quickly fell apart. I was in pain all the time and had unexplainable symptoms that would come and go in the blink of an eye. I had to go to several different doctors before I was able to find someone who took my concerns seriously…

In April of 2008, I was diagnosed with lupus and rheumatoid arthritis. While I struggled with frequent doctors appointments and medical tests, and not feeling well, I also struggled with what these illnesses would mean for my graduate school career, and more broadly, my life. Simply asking my department for symbolic recognition of the situation and its varied consequences was met with resistance and unease. I felt like I was met with the implicit charge that:

If I couldn’t cut it for any reason, I shouldn’t be here…

This journey has been fraught with failed attempts and missteps. The tangible changes, in many ways, remain to be seen. I know that my situation is unique in that it started while I was in graduate school and that I have a set of very unpredictable illnesses. But should you become a player in this game, or if you are already in it, you probably know, that it is not for the faint of heart.

Still, as I’m sure there are many others out there, as well, I mostly suffer in silence. As my cohort mates celebrated the end of our first year of graduate school last April, I was at the hospital receiving outpatient intravenous therapy. A stark contrast to the 22-year-old, graduate student life I thought I’d be living. It is only a recent innovation that I don’t rush to the bathroom to take my medication five times per day so that no one has to watch me pop pills and wonder why.

There is no doubt that illness is a lonely pursuit. It is isolating. It is a litmus test for friendship. And most of all, it is exhausting to wear the brave face all the time and have everyone around you be none the wiser. This is especially frustrating that when you do ask for help, you are met with ambivalence, and sometimes, downright nastiness.

It is ironic that those of us who are sick and tired, who are the most vulnerable, are expected to lead this fight on our own. As sociologist C. Wright Mills wrote in 1959:

Men do not usually define the troubles they endure in terms of historical change and institutional contradiction [...] They do not possess the quality of mind essential to grasp the interplay of man and society, of biography and history, of self and world. They cannot cope with their personal troubles in such ways as to control the structural trans-formations that usually lie behind them.

The truth of this matter hinges on Mills’ words. This personal problem, of illness and disability, is in fact, very much a public issue – even for those of us with invisible illnesses and disabilities. And until it is seen as such, the individuals that sit before you tonight will daily have to battle in order to gain the recognition and help they deserve.

*****

As I expressed earlier, while individual action and change are important, the difficulties incurred by Katie, Walt, and I point to much more deeply imbedded, systemic issues, issues that will not be surmounted by individuals alone.

There are many matters that still need to be resolved. People are often hesitant to attach labels to themselves or to be open about such issues. While I have become adept at talking about my illnesses, this is, in fact, the first time I am publicly disclosing them in a forum such as this.

At the heart of the matter, is often that people do not stand up for issues that do not directly involve them. As journalist Richard M. Cohen wrote in Strong at the Broken Places: “Know this. Ninety million Americans battle chronic illnesses everyday. Welcome to your future.”

While this statement may sound harsh and threatening, it is the truth. Although chronic illness and disability may not be on your radar screen today, they may be your reality tomorrow. That was the case for me. While disability issues were in the back of my mind, I never expected them to become “my” issue. But now that they are, I hope that with the help of others, something good can come from my experience.

What is truly needed, then, is a network of students who are disabled, chronically ill, or are aware of the importance of such issues, not only to those who are directly affected, but to the University community as a whole. We all deserve a living, learning, and working environment where we feel accepted and appreciated, and where our voices are heard, not because we are alone, screaming at the top of our lungs, but because there is a chorus of voices harmonizing together.

Grand Rounds: The Year's Best Posts

Check out this week’s edition of Grand Rounds over at Laurie Edwards’ blog A Chronic Dose. Laurie presents her picks for the best health-related blog posts of 2008. (And mine is one of them!!!)