Friday, March 25, 2011

IRL: The Rare Disease Edition

So, last weekend I met and had brunch with a fellow PCD patient. (Hello, L, if you are reading this!)

That sentence is actually pretty monumental. You see, it is the first time I have ever met someone with PCD (and bronchiectasis) in person. And, for all I know, it could be the last.

(There was that one time a young PCDer happened upon a book reading I was doing for Life Disrupted totally by coincidence, but we were both a little under the weather and therefore could not come in contact with each other, so I saw him from afar but did not meet him.)

It is a reality of life with rare diseases that we can go years, decades, even lifetimes, without meeting other patients in person. When I was first correctly diagnosed, I can’t tell you how helpful it was to know other people like me existed, and to read their stories and advice online. The impact of the Internet on the patient experience in general and the rare disease patient in particular is so important and so layered I plan to tackle it on its own and in other venues.

As you know, I am staunch believer that our experiences as patients with chronic illness unite us more than our different symptoms and diagnoses, and I will always believe that. At the end of the day, dealing with acceptance, control, relationships, balance, work, families, etc are universal challenges.

However, there is something so different about seeing someone in person. To drink coffee and swap stories with someone whose experience so closely mirrors your own. (In our cases, collapsed lungs and pneumonia at birth; frequent and serious infections throughout childhood and on; multiple surgeries; multiple hospitalizations; incorrect labels and diagnoses; secondary conditions like bronchiectasis and infertility; etc, etc.)

Oh, and we could cough and it was no big deal, and no asked if we needed water or were sick because everyone at the table knew that cough was as natural to us as the inhaling and exhaling everyone else does that we can never take for granted.

I don’t want to say it was validating, because I have my correct diagnoses and treatments now and am past needing validation. I think comforting is the right word, because despite technology and blogs and social media and online forums and everything else, being a patient with a disease nobody recognizes and nobody around you has can be isolating.

How many of you have felt that way?

(And I’m not talking about the health care delivery implications of people not recognizing it; I’m speaking strictly of the social and emotional aspects of living with these conditions.)

A sense of community is harder to come by when it comes to rare diseases. There are no disease awareness months, trendy wristbands, walk-a-thons, etc. Thankfully we have the umbrella National Organization for Rare Disorders, and numerous disease-specific work tirelessly to advocate and research for new medications and treatments.

But day to day, in the shuffle of work and doctor appointments and daily chest PT, in the managing of all the other conditions that take second seat to how well can I breathe today, it does feel a bit lonely.

I’ve been thinking about community a lot these days, especially since my post on audience: the power of communities to abandon differences and unite to effect change (the disability right’s movement, for example); the power of disease-specific communities to achieve tangible results (the early HIV/AIDS movement, for example); the power social media has to create and sustain communities and disseminate knowledge (for the better and the worse.) Looking at current events in the world right now, clearly this discussion is not limited to patient communities.

Though I’ve struggled with assimilating my writing and blogging with the new communities I find myself (parenthood, working mother, mother of a patient, etc) I am getting there. And while I have a lot more to write about the points I mentioned above, on a personal level, I am trying harder to connect to the communities I dohave.

An avid reader, I’ve been terrible about commenting on blogs the past few months, and can do a lot more here, too. I’ve also updated a sorely out of date patient/medical blog roll, and added a whole new category of parenting, infertility, and adoption blogs that I read. For either category, shoot me an e-mail if I’ve missed you and shouldn’t have!


Rachel said...

Monumental, indeed! Glad you were able to have that in-person experience, as I know it makes all the difference. I am becoming more aware of how GREAT the diabetes online community is, but how LONELY it must feel to be part of a disease group with so few members. (So I hope that the ChronicBabe forum group on rare diseases can grow, though.)

While not as "rare", I do find mental health issues much more isolating than diabetes. No meetup groups, only online connections, etc - part of that has to do with the nature of the illness, though, too. We may all be experiencing too much anxiety and/or depression to get out there and support each other in person.

Laurie said...

Thanks, Rachel! (And that reminds me, I need to check in with that forum!)

I totally, totally agree with you and can imagine that patients with mental health problems feel as isolated as rare disease patients do...perhaps even more because, as you say, the symptoms themselves can really influence the ability to connect to whatever support may exist.

Lynn said...

Thankful that at least for PCD we do have a great community! There are so many of us out here. I'll have to send you one our trendy wristbands:-) Hope to meet you at one of the annual PCD Family education days.

Laurie said...

Hi Lynn,

Thanks for stopping in! Yes, we are lucky there is such an active, involved community! I have learned so much from other people with PCD.

It was a different experience altogether to meet someone face to face, as I'm sure you can relate to...nice when the names on the screen have a face!

(And sure, would love a wristband :)

Grace Carpenter said...

I discovered your blog, and this post hit home. I'm a 47-year-old mom with 2 young kids, and a year ago I had a stroke. Although stroke is unfortunately too common, some of the disabilities that result--movement impairments, speech and cognitive issues--can be very isolating. Thank you.

Laurie said...

Thanks so much for stopping by, Grace! A loved one recently suffered very similar issues and having watched her struggle to assimilate her symptoms and manifestations of it, I can only imagine how isolating brain injury can be...particularly, I would think, given how young you are for this type of event.

Peter Waite said...

Great post Laurie. I often think we forget about the lack of community support for those with rare illnesses, but like you said the challenges are universal.

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