Who is the happier man, he who has braved the storm of life and lived or he who has stayed securely on the shore and merely existed?Hunter S. Thompson
Even before I went autoimmune-crazy, I was boy-crazy. Because of that affliction, I have inevitably gone through a fair amount of breakups. There is little in this world more heartbreaking than detaching yourself from someone you loved enough to build your life around. In the most severe cases, going through a breakup can often be as painful and dramatic as the death of a dear friend or family member. These devastating losses can inflict a range of emotions so intense that emotional pain becomes physical. And in breakups and death alike, you often go through a complex process of grieving. Emotional conflict reigns supreme as you mourn the loss of their presence in your life, while simultaneously resenting them for leaving you when you needed them the most. Regardless of the cause, it is a tidal wave of pain you won’t soon forget.
The same type of gut-wrenching loss can be felt when diagnosed with an autoimmune disease or chronic illness. Only in this instance, you have been abandoned and betrayed by your very own body, the single person who, by rights, is not allowed to leave you, which somehow makes the treachery seem even crueler.
A scary medical diagnosis can turn your world inside out and provoke a monsoon of emotions, not the least of which are anger, confusion, and fear; but above all else, there is grief— for the unwavering sense of self that has vanished in a single moment, and for the person to which you realize you were not yet ready to say goodbye. The deficits continue to add up: your health, your personal identity, your confidence, your plans. And it doesn’t stop there, but multiplies as you begin to lose more tangible pieces of yourself, such as an organ or a limb. Still, before the ride is over you will also grieve for your energy, your independence, your faith, and possibly, your home, job, pets, and even lovers, friends and family. Autoimmune disease is the gift that keeps on giving, or rather, TAKING. It’s one of life’s dirtiest tricks, fate’s ultimate affront.
But it is within our human nature to process this loss in a logical progression and as with any other major casualty, you must adequately mourn before moving on. Grief is universal and stages of grief are consistent whether related to death, a breakup or chronic illness. They don’t always happen in a particular order, but eventually they all happen. I can attest to going through all of these – many times in fact. My memory of them is very clear during the first autoimmune disease and I can see evidence of them in the notes of family and doctors during the second.
Denial is often one of the first things we experience. This can’t be happening to me; this must be a false diagnosis; it all feels so unreal. I can see that denial manifested through the numerous times I had to be told of my condition – maybe it was a subconscious avoidance technique to unintentionally block it out.
The anger phase can be a slippery slope because while you are absolutely sure that you are mad you don’t know who or what you’re mad at. Misdirected anger can cause you to lash out irrationally and anyone within shouting distance suffers the wrath of your fury. (Add in the obligatory high doses of steroids and you have the makings of the next Hulk).
Bargaining, or what I like to call Crisis of Faith, can also surface in many forms. During this phase of my first autoimmune diagnosis and treatment I tried everything I could to amend the situation and bargain with God. I had purchased various patron saint candles, I meditated and prayed, I tracked down a mustard seed necklace to remind me to have faith. During the second illness, I completely bypassed all of that supposed “nonsense” and went straight to the source, my feverish state causing me to believe I actually WAS God.
The depression stage is the most challenging, in my opinion. In both cases, this is the one that lasted the longest for me and had the most significant impact, especially considering that I had a history of depression and anxiety that was often intensified by medications long before any of these rare diagnoses. The first time I sunk into the depths of this phase during the kidney disease, I nearly quit going to dialysis treatments in defiance, risking my life. When I hit rock bottom the second time around, it was about a month post rehab. Before that moment, I had not yet had the functional capability to wrap my confused brain around the full significance of what had happened. But when it did hit me, all of a sudden the fog began to clear rather quickly and I realized all I had lost. By this time, my family had relinquished my apartment out of necessity and fear, for if and when my recovery would allow me to ever return. My beloved cat and dog had been given to family friends for the same reasons and no one was sure how much neurological damage had been done. I still had problems with physical activity and mental focus, spent much of my time sleeping and we did not yet know if I would be able to return to my job or even live on my own. But I was recovered enough to finally grasp that everything I had worked so hard to rebuild after my first bout with illness had been snatched out from under me once again. It nearly broke me once again.
It certainly hasn’t been an easy ride for me or my family. But over time, I have come to accept the journey I am on. I think it’s important for us all to embrace the grieving process as a form of self growth. By no means do I enjoy being ill and I don’t revel in the awesomeness of these moments that have changed my life completely. But I accept these adversities of life and I am grateful– for the lessons I have learned, the compassion and generosity of spirit I have been blessed to witness, and the hidden strength I found within. I wouldn’t wish these circumstances on anyone, but I do believe I have come out on the other side a better version of myself.
And I have added my own final phase of the grieving process: inspiration. This is what I believe happens after you weather the storm and decide to turn a negative into a positive. When you can finally step outside yourself and contribute to the greater good, offering small pieces of your journey to help others with their own.
I wake up every day thankful to be alive and choosing to believe that although grief is universal, so, too, is its antidote: compassion.