How I Deal With Survivor's Guilt as Someone With a Rare Disease

I just couldn’t do it. I couldn’t go see his parents.

My church was having an activity where we were visiting the parents of a member of our ward. It was a friend of mine, who died not even five months prior to due to complications of Lyme disease.

And just thinking of seeing his parents made my heart stop and my hands shake.
Because I felt guilty. And I hated myself for how guilty I felt.

Because he was in a good spot when it came to his health. He had a girlfriend who he adored and had fallen in love with. His life was seemingly coming together. But after months of a constant health decline, I was alive and he wasn’t.

And because of that… I couldn’t even imagine looking his parents in the eyes.

In my opinion, the majority of those who have life-threatening diseases spend 90% of our time in a full-blown sprint, racing against death. Sometimes we know the right trials and paths to keep death far in the distance. And other times, death gains pace as we lose pace. We try everything we can to avoid it. But at times we can feel its hands wrapping around our throat. Leaving us pale and terrified, pleading to get out of its grasp.

For years, I have more times than I can count felt death’s grasp, barely eluding its capture.

But my friend, who was finally on an upswing, was dead. And after months of feeling my health wither and decline, I wasn’t.

Emotionally I’m eternally grateful for every day I get. But every time a friend of mine, sick or healthy, dies (especially one who is young) — it doesn’t make sense. It doesn’t make any sense.

Because I was prepared. I have funeral plans scribbled by 18-year-old me in a notebook. I was dying. I felt my body start to fade. At the age of 20 I had doctors tell me to “enjoy what life and quality of life you have left.”

As I felt myself slowly and miserably dying, I’d pray to God for just “one more day,” every night before I went to go to bed.  And somehow I’ve had five extra years of “one more day.”

But so many aren’t blessed with that extra day they and their loved ones pray for.
I watch friends, family and acquaintances frozen with grief as they face the unpredictable and unmanageable death of a young loved one.

I see Facebook posts at least monthly in different support groups reporting the deaths of girls my age, with my exact diagnosis.

I’ve witnessed mothers of healthy children who have died — stare at me with disdain, as I limp or wheeze down the hall. Their grief-stricken eyes practically screaming, “how is it that you are extremely ill, but still here… And my child. My beautiful, healthy child is not?”

I’ve had the weight, the immeasurable weight of those who have lost their battles to the diseases I have, friends who have died. Families who are mourning. Everyone who didn’t get “one more day” that I’ve placed crushingly upon my shoulders. Making me wonder if I’m in even doing “enough” with these extra days I’ve been given.

But I have to remember that the days you are given are not something you earn.
Some of the greatest souls heaven has ever known were and are given some of the shortest number of days on this earth. The amount of days you are given is a unpredictable gift from God that has nothing to do with “earning your keep.”

But how you choose to live those days — that’s completely up to you.

You don’t have to constantly be trying to change the world to “earn your keep.”
You don’t have to “earn” your right to still be living, even when so many in your situation didn’t get that privilege.

But you should remember that life is a privilege. Some days you are going to curse, scream and cry. And wonder why life has to be so unfair. And that’s completely OK. Those negative emotions are essential to experiencing all that life has to offer.

But you have to remember the air that fills your lungs as you sob is a blessing. You have to remember the sun shining on a perfect spring day and hitting your face just right is a blessing.

Every holiday, hearing the laughter of your loved ones, the fight you had with your sister, your first heartbreak, the shake of the (many) bottles filled with pills that keep you alive, the collection of wrinkles forming at the corner of your eyes, your first grey hair — they are all blessings.

Each ounce of life we get the privilege to live is an immense gift. A blessing beyond comprehension.

Some days you can get so wrapped up in the guilt that “you are still here,” when so many amazing people aren’t, you lose sight of the phenomenal gift that you are still here. And that gift will never be used to its full potential if you feel to guilty to use it.

So soak in the sun, binge Netflix, eat the cake, buy the shoes, cry and scream on your worst days. For real. Let yourself scream, cry and experience every emotion and experience life had to offer to its fullest.

Until we speak to God himself, we will never understand why some live and others die. But we can live in a way that shows gratitude to the fact, the beautiful, mind-blowing fact that we were given today.