How do you learn to receive good news, when all you’ve heard is bad news?
I am rejoicing and excited to have confirmed answers, but I’m not quite sure what to do with myself.
Maybe because I’m left wondering, “Ok, now what?”
I have been preparing myself for a diagnosis for a year, but never prepared myself for what it would look like to recover from or live with any kind of illness, syndrome or disease.
I have been diagnosed with POTS (postural orthostatic tachycardia syndrome). And if you read my last blog post, you read about the many questions that still hung in the air. I received the diagnosis from a doctor who had not heard about my symptoms or seen the previous test results. I was left wondering if this diagnosis was completely separate from my symptoms of fatigue and shortness of breath or if POTS was the answer I had been looking for.
After a series of calls and fighting to have some real answers, I finally received my answer.
My doctor believes my symptoms are consistent with POTS and referred me to a POTS specialist. I will see that doctor in the end of September (the downfall to the medical world. That is two months away!) It is difficult to wait that long, not quite knowing what to do in the meantime. I was sent a list of lifestyle changes that I can begin and see how that makes me feel, but a diagnosis hasn’t changed how I feel every day. The doctor won’t quite be able to do that, either. He may be able to offer specific ways to handle POTS in my own case, but I can’t rely on anything to change how I feel.
This has become a constant season that tests where my hope lies. If it lies in a diagnosis, then how do I handle the road to recovery? If it lies in doctors, what do I do when I feel the same after so many appointments? If it lies in myself and my ability to make lifestyle changes, what happens when I fail or I still don’t get better?
My hope can’t lie in people, including myself. My hope can’t lie in lifestyle changes. My hope can’t lie in the future.
My hope lies in Jesus who overcomes all of those things. He gives me hope in the midst of a diagnosis. He has the power to heal. His abundant grace covers my failures when I can’t do everything right. He has my future and says that it is good. He is my strength when I am weak and feel useless. He gives me an unchanging identity when I feel like all that I hold close comes crashing down around me.
This syndrome in no way defines me, nor does the diagnosis. But my health shouldn’t define me, either. I will begin this new road. Rather than hopping from test to test and crying out for answers, I will begin a health journey in the hopes of finding healing. I know that Jesus can heal me in an instant if he wants me to be healed, but I also believe he uses these situations to bring about his glory in a bigger way.
I get to enter a community of people who suffer at varying degrees with this syndrome. I get to learn from other people and share where my own hope lies. I get to experience grace in a new way.
This is the end of one journey and the beginning of another. It’s like the peace you feel when you watch the sun set on a long and hard day. You rest in the fact that the day is over, but you wait for the sun to rise tomorrow. I will keep sitting to watch the sun set, and rest in that peace. It’s over, but tomorrow begins something new. And that’s ok.
If you are interested in more information, this link is helpful: https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots