Am I Ready to Accept That My Health Will Keep Declining?


Am I ready to accept that my health will keep declining?

I often see so many people with chronic illnesses having to ask themselves this question. So should they face this sobering fact and just give up and adapt to their “new normal”?

Miranda Edwards

Having a disease like mine, health decline is inevitable. I have metastatic pheochromocytoma, a rare type of cancer that secretes an overdose of hormones called catecholamines. Each surgery, procedure and treatment takes a toll. Already living with pheochromocytoma cancer has its constant health challenges; it’s plagued me with subsequent adrenal insufficiency, severe post-operative chronic pain, multi-organ removal, extensive physical limitations and daily symptomatic attacks from the tumors. And these are only the major physical detriments.

Did I mention I’m only 25?

After my first surgery at 19 to remove my first dangerous pheochromocytoma benign tumor, I never quite recovered. The damage was too extensive. I underwent a complicated surgery, and it was difficult to come back from that. It becomes more and more challenging to get under control once the procedures start compounding, and you never really feel quite ready to take on the next.

When I took on the unwanted responsibility of living with what I was now told was pheochromocytoma cancer, I knew my health would decline even further, whether or not I wanted to accept that. There’s a certain reality we must possess when entering into these situations for our own well-being. We must have positivity for our survival and for those around us, but we must also be realistic in order to make it through for everyone involved. We can’t mistake realism with negativity.

I often say that I don’t feel I’m fighting cancer; I live with cancer. What I fight for is the ability to continuously mend myself back to health, piece by piece, taking back what this disease has stolen from me.

I fight to recapture the most important parts of my life. I fight to maintain an almost impossible level of positivity — one that is not superficial — and share it with as many other people who are fighting as hard as I am. I fight for hope when the odds allow for absolutely nothing but the opposite.

We fight for our lives, we fight to be able to smile, we fight to choke back the tears that threaten to come pouring out at any moment. We fight for the ability to continue to cope with everything we’re facing, so we can muster up the strength to continue to “live with” these diseases.

As I continue to live with this worsening illness, I have to ask myself like so many others living with chronic illness, “Am I ready to accept that my health will continue to decline?”

I’m here to tell you if your health does decline, be prepared to pick yourself up and press the reset button. Because that’s what it is: a new beginning. It doesn’t come without some devastation, but it isn’t impossible. I’ve had to do it every time; I am still doing it.

Yes, your health may worsen over time when you’re living with a chronic illness. This is why we must view it differently and be prepared to accept the pieces you lose are worth fighting for. Even though I’m physically at my weakest point currently and experiencing more pain than ever, I’m still slowly picking up these pieces.

Despite how badly I feel this time around after my latest procedure, I’m doing everything I can to feel a little better than yesterday. That counts for something to me. That’s part of my reset and my acceptance. What’s yours?

Follow this journey on Pheo VS Fabulous.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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