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?