You may feel lost, uncertain, afraid of what the future may hold as you lose the letters that defined you for years. You may wonder if you should feel differently — happier, more relieved, thankful to no longer shoulder the weight of a label. But your diagnosis just changed, and the unexpected news has left your mind reeling as you search for answers.
You may ponder who you are, feeling existential dread creep into your mind as you question your rapidly-shifting identity. Without the label that dictated your symptoms, your treatment, your lifestyle, you may feel like you’re floundering, grasping at anything that will help you maintain the life you’ve known for so long. But remember that even as you recategorize your symptoms and refine your treatment options, you remain the same — full of dreams, goals and love for the world around you.
You may fear that you’re a fraud, that you’ve been living in schadenfreude for years, claiming a story you have no right to carry. As you look back on your years of treatments and procedures, you wonder if speaking out about your experiences misled your nearest and dearest, wondering how they’ll react now that your story no longer feels like your own. But remember that even as you ruminate on your perceived fraudulence, you have always lived authentically, and your new set of labels doesn’t diminish your honesty.
You may feel anger overtake you, wondering if every treatment, every procedure, every therapy session was in vain. You may resent the professionals who never seemed to have the answers that spoke to you, grieving all you’ve been through as you wish your life could be different. But remember that even as you express your hatred over the trials and tribulations you’ve faced, you have every right to your feelings, the internal conflict between resentment and understanding.
You may feel like you’ve been stripped of your identity, as though without your diagnosis you have no place in the world. You may struggle to leave behind the label that’s connected you to friends who became family, wondering if you will remain an outcast in a world that rarely seems to understand. But remember that the bonds you’ve fostered because of your health will remain strong and untainted, and you will be welcomed into a new world of understanding and connection as you navigate these changes in your life.
You may feel like you no longer have a story to tell, that the chapters you’ve already written have suddenly come to an end against your will. You may feel like your life is over, like your world is so irreparably shattered that it can never be restored. But remember that losing your diagnosis and gaining a more nuanced understanding of who you are has provided you with a pristine path, a brand-new story to share, to intertwine past and future as you carve out a new path.
You may feel alone as you wonder if anyone else in the world understands your pain, your heartache, your strife as you cope with sudden endings and new beginnings. You may feel unseen and unheard as you cry silent tears, pore over your fear of rejection, and hope for the solace of connection. But remember that in the midst of your loneliness, you will discover you are not struggling in isolation, that so many others are grieving and pondering and reconceptualizing alongside you, and together, you’ll heal.
If you’ve just lost your diagnosis, you may feel like you’re drowning in an unknown world, feeling lost, misunderstood, and devoid of your identity. But as time passes, you will forge new connections, rewrite your story, and discover that you remain the tenacious, kind, determined person you’ve been for a lifetime. As you heal from your grief, remember that you are seen, you are heard, and you are always loved.