3 Lessons I've Learned From Grieving an Unexpected Diagnosis

In the past year, I started experiencing lightheadedness, fatigue, headaches, shortness of breath, and “brain fog” — and the symptoms increased the longer I stood. Basically, I was experiencing everything some people would feel before fainting, but luckily, I’ve never hit the floor. There are days when someone speaks to me, my mind is cloudy, and I’m trying so hard to process what they are saying to me that it becomes exhausting.

Two weeks ago, I had no idea what neurocardiogenic syncope was. I had no idea I was about to be told that three of my heart valves were mildly leaking and that I have a small hole near my atrium. It was honestly unexpected news.

I’ve heard “Your lab work and scans were all normal” so much that I didn’t expect to hear anything other than that. It took me a week or two to actually process the news. I felt like I was passing through the five stages of grief over and over again.

Denial: The scans I had a few years ago never showed this, so what if the doctor made a mistake? Sometimes I do have good days when my symptoms are minimal. Are my concerns even valid?

Anger: Didn’t anyone catch this years ago on my last scan? Of course with my luck, this is happening to me.

Bargaining: What if I had taken better care of myself? What if I had changed the way I eat and exercise? Would this still have happened to me?

Depression: I have a lot of health anxiety regarding my heart, and it also manifests as depression symptoms. I am at a high risk for stroke, and I am terrified of the possibility of dying young. I’m also afraid  of having to face one of my worst fears — open heart surgery.

Acceptance: So far, everything is mild and just needs to be monitored. My relationship with my body has changed, and there are things I have to do differently now, but that’s OK.

One aspect of an invisible chronic illness is the compromise and sacrifice that often comes with living with the condition. You may be trying to navigate your life while simultaneously trying to figure out what type of life won’t make you feel too sick. It can be really frustrating — especially if you’re young. Changing your life plans can come with a lot of sadness and grief.

When something in your life gets turned upside down at such a young age, you may start to view life differently. One good thing about me, though, is that I have the desire and willpower to persevere. I’ve had to accept that I have some limitations now, but that isn’t going to stop me from achieving anything I set my mind to. There are a few things I’ve had to learn how to do differently, and there also are a few things I have learned about life in general.

1. It’s OK to grieve for the life you had before your symptoms began.

I don’t remember the last time I was able to walk around a store or through the mall without feeling like passing out or needing to stop to catch my breath. I went to IKEA with my boyfriend a week ago, and at one point I got so lightheaded that I had to stop. I was walking, which had come easily to me before my symptoms started.

Sometimes I feel like because I am young, I am invincible. But that’s far from the truth, and I’m grieving it right now.

2. Don’t take the little things for granted.

I will never take for granted how good a deep breath feels.

Learning the power of breath saved me. When control of your body is taken away, breathing is something that can allow you to gain some control back. If all I can do is take a few big, deep breaths, that’s OK because that still means I’m alive. Being able to breathe during procedures or episodes is helpful to me. Whatever you are feeling in the moments when you find yourself needing to focus on your breathing will probably pass. I am grateful for the power of breathing.

3. It is OK to rest when you need it.

If you are tired, that is OK. Your mind and body might be adjusting to your condition, and it may take a while to find your new baseline. Our bodies seem to be always changing, and that is OK too. Every day is different for most people.

We live in a society that can promote a toxic productivity culture in which not taking breaks and working overtime is applauded. However, for me, taking regular breaks and sitting down has been crucial to preventing burnout and symptoms of syncope. If I haven’t taken a break for a while, my body will definitely let me know that I need to. Trust your body — it knows you best.

When you have a chronic condition or have recently been diagnosed with one, lean into it. Learn everything you can about your condition. Learn from your body. What makes you feel good? What makes you feel sick? Start to intentionally seek out and recognize the good things in life and be grateful for them if you can. Use what you learn to help others — just as I want to do.