Wednesday, November 12, 2014

On Becoming A Professional Patient

Lately something I am really struggling with is balancing blog commitments with my work and school commitments.

So many amazing opportunities have come my way in the last year and a half, as far as my blog is concerned, but it is hard to keep that momentum going; I’ve had the opportunity to attend, most recently, Stanford Medicine X, the ePatient Connections conference, and a Creaky Joints meeting.  This weekend I will be attending a meet-up at the American College of Rheumatology (ACR) annual meeting. 

Now that I’m working part-time – four days a week – and going to school one day a week – I am exhausted all the time.  This means I do not have the time or energy to work out, or do much else of anything.  I’m lucky on nights where I don’t fall asleep on the couch before 9:30 p.m.

I know many people with chronic illnesses that are self-employed.  And I certainly get the flexibility that it provides.  However, it also means that you are responsible for finding and paying for health insurance, it may mean that you do not have a steady or consistent income, and you may not have other perks that a more traditional job might provide. 

On the other hand, self-employment allows you to take breaks throughout the day, makes it so that you do not have to call in sick every time you don’t feel good, and allows you to accommodate any other needs specific to your health condition. 

So what is the best way to deal with this?

By May, I will have two Master’s degrees and a PhD.  The thought of not working after all of that seems silly. 

But a 9-5 job is exhausting. 

Having a full-time, traditional job also means that I would have to find an employer flexible enough to allow me to take time off to attend conferences and other events, or it means having to give up those opportunities.  It also means being straightforward and realistic about my health issues and how they could potentially impact a traditional job.    

Obviously, I’m aware of how lucky I am to have this problem. 

Trust me, I know. 

My blog has sustained me these last six years, so it’s hard to imagine having to walk away just as the momentum has picked up. 

So how do you balance “real life” and blog life?  Do you think it’s possible to have a professional job as a patient/advocate and a job writing blog posts and attending conferences as a patient/advocate? 

In some ways, because of where my professional life is going, these two things are not really separate entities anymore.  But when I face the realities of what full-time work might mean, if that is sustainable as my illnesses ebb and flow, I also face the reality that I can only do so much. 

When it comes to purely social events, I’ve become really good at knowing what my limits are.  But when it comes to school, work, and blog stuff, I haven’t found that sweet spot yet, or the ability to say no to things.  As opportunities come my way, I want to embrace all of them. 

So what gives? 

How do I keep this part of my life that I’ve built from the ground up in terms of blogging, and the side of my life that I’ve worked so hard for?  


  1. Leslie, I think this really is a balancing act--and since you're already doing it, I think you'll be able to continue. You may find that working full time isn't quite as exhausting as working while also being a student, and as for blogging ... well. Blogging is also advocacy, but it's personal, too. You've probably noticed that your fellow autoimmune arthritis bloggers sometimes have long stretches of silence between posts, or even take hiatuses for awhile. And that's all right--healthy, even. I think as time goes on you'll find a way to balance work, daily living, dealing with your lupus and RD, school, and blogging so that everything gets done--without killing the doer. Instead of fretting over it, just breathe deeply, let the fear go, and move on. It'll all work out.

    I'm so glad I got to meet you last weekend at the Joint Decisions Summit and ACR convention. You're phenomenal!

  2. Hello Leslie,

    I have been reading your blog and I stumbled upon this point about working with RA. I completely agree that the balance is so difficult to find and there are pros and cons to each situation. It is so important to find something that works best for you. I am actually going to write about my experiences in my new blog, I hope you check it out and I look forward to reading more of your posts in the future!.