Last week, we shared five tips on how friends of cancer patients (or other serious diseases) can support their friend during battle and recovery. We reached out to Paula Steinmetz, a patient of Dr. Perez with Idiopathic thrombocytopenic purpura (a rare autoimmune disease), who has some pertinent insight and words of wisdom to share.
Continue To Be A Friend
By Paula Steinmetz
I have an invasive, life threatening illness which has been ongoing for 18 months. My general practitioner said to me early on in my case, “Be prepared. Your address book will change and people will disappear.” I was not prepared for this change that followed.
Initially, friends and families rallied, but it did not last long. I was devastated, and I continue to grieve at great length as people I loved disappear. I have considered this at great length. I think people have an expectation that medicine will bring a cure. Then as it drags on and as you yourself struggle with illness that diminishes your strength, your stamina, your physical appearance and your own journey to mortality, people find themselves unsure of how to approach you. On so many levels, they disappear...and then your support diminishes to a deafening silence.
Yes, I am chronically ill. Yes, my body and my mind find little time to dismiss the captivity of illness, but I am still alive. I want to talk. I want to laugh. I want to know I am cared for.
Small steps provide support. Text a simple message that you care, offer thoughts of love and concern, and do not be offended if sometimes they don’t answer quickly. We are not always able to respond quickly because we are sleeping, we are suffering from side effects, and we are consumed by fear and struggle. A simple card, a simple text message, or an offer to visit for an hour makes the sick feel loved and optimistic. We are the same person with an inconvenient truth—that our body is at war, but we find joy in your visit and the ability to talk openly about this journey.
Offer to bring lunch. Allow a sometimes very quiet peace, in just a moment, to touch me physically. A hug and true conversation about what is happening give me peace.
Finally, leave your religion and judgment outside of all conversations. I have had people say that my lifestyle was a direct cause of my illness. 1) You are wrong. 2) You have placed a judgment on me as if I got what I deserved. And 3) Do not state that I have offended God and must repent and pray for forgiveness.
Actions speak louder than words, and no words mend the irreparable scars that abandonment does. Don’t run away. Living in this void of support tears the very fiber and denies life, love and compassion.
Getting The Medical Support You Need
If you have received a cancer or blood disorder diagnosis, or know someone who has, Dr. Perez and Sierra Nevada Cancer Center can provide the expertise and support needed to take on the disease—head on. Contact us today.