Lupus and Caregiving: Getting the Diagnosis - it's never easy.

For so long, my mom’s health situation didn’t have a name. We chased a handful of unpredictable and inconvenient GI issues over the course of a year and a half, but they amounted to nothing. There was no diagnosis. It was just a juggling act of monitoring and managing symptoms, booking medical visits, and connecting the dots between tests. My mom was a trooper, for sure.  

But now we have a diagnosis. Her health situation has a name. It was nothing. Now, it’s something. In fact, it’s everything. It’s Stage 4 ovarian cancer. It has spread. Hers is terminal. She’s forgoing chemo. And we’re left to simply make her as comfortable as possible. Ugh.

It all just happened so fast.

Of course, it really didn’t. The six weeks since we received her diagnosis have flown by, but the year and a half we spent searching lasted for what seemed like forever. The puzzle pieces just never seemed to fit before, so we kept trying to uncover new pieces. When the barrage of symptoms didn’t let up, we kept tracking to see if we could make them lead somewhere.

It called to mind how challenging a lupus diagnosis can be. It can take years for the symptoms to line up just right so that a proper diagnosis can be made. Symptoms come and go. They never occur at the same time. They’re attributable to something else. They couldn’t possibly be serious – given your age, good health, or “insert reason here.”  I can’t imagine waiting for those puzzle pieces to add up for lupus. If you remember, my diagnosis was atypical – it was just six weeks from the onset of my first symptoms. It came on hard and fast – and for that one aspect of my lupus journey, I try to be thankful.

Because now I know how hard the waiting game can be.

But I also now know how hard it can be once the diagnosis comes.

Let’s pause for a minute, though. It’s extremely important to point out that 80-90% of people with lupus who receive treatment and are under the close care of a physician can expect to live a full life. That’s a game changer. Those weren’t the stats when I was diagnosed over 20 years ago. No matter how difficult the lupus diagnosis may be, no matter how much easier it seemed the day before we got the diagnosis – the day you’re diagnosed is the beginning of something. You can start getting the care you need. You can get the treatment you deserve. You can start rebuilding, with lupus in tow.

I suppose that’s the way I can try to view my mom’s current situation. It’s simply the beginning of this next stage. We’re currently counting the weeks, hoping for months. But we could just stop counting, and start enjoying what we do have in this new part of life.  

I’ll let you know how that goes.



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