Talking to My Family About End-of-Life Decisions

Amy Gietzen avatar

by Amy Gietzen |

Share this article:

Share article via email
coping with pain | Scleroderma News | diagnosis | banner image for

Twenty years. That’s how long I’ve been living with scleroderma. That’s half of my adult life!

Over the years, I’ve learned how to cope, be it physically (not being able to do things without help) or emotionally (living with a disease that changes your entire life). I’ve tried my best to keep a positive attitude, even when I’ve felt my worst. I’ve learned to educate myself about my condition and treatment options, including clinical trials and different forms of medication. All of this is to stay on top of scleroderma’s ever-changing symptoms and side effects.

I found out early on that I must be my own advocate and fight for what I feel is in my best interest. I know that being mindful of my condition and its treatments will prolong my life and help to combat the symptoms.

Even after living with this disease for so long, it definitely hasn’t been easy knowing an illness eventually will take my life. It’s still hard at times to speak about my disease getting worse. It can all be so overwhelming: thinking about end-of-life care, preparing a will, making funeral arrangements, and deciding who will be my healthcare proxy and if I want to be given last rites.

Recommended Reading
organoid | Scleroderma News | illustration of mice in lab

2 Medications Shown to Reduce Fibrosis, Inflammation in Mouse Study

How does one even strike up a conversation with your loved ones about end-of-life options? It’s not something to get into over a family dinner or a phone conversation.

When is the right time to talk about when I’m gone?

I use the words “when I’m gone” because I know it’s not an “if” situation. My disease is progressive and has no cure, so it’s never been a matter of “if.” It’s always been about how long I have left to make memories and imprint my life on my loved ones’ souls, making sure they won’t miss me too badly when I’m gone. That’s been very black and white to me pretty much from the words “you have scleroderma.”

It’s a weird feeling to know I won’t be alive to see certain milestones in my loved ones’ lives, a feeling that is almost too difficult to describe. Unfortunately, it’s a subject that needs to be addressed so my family can be at peace with my decisions, and so I can feel at ease with leaving my loved ones behind.

When emotions land on the word ‘acceptance’

“OK,” I said to myself. “I have this. Scleroderma is not going anywhere. So how can I prepare family, friends, and myself for what will eventually be the end of my battle?” I decided I wasn’t going to be a victim of my circumstances. I was going to walk in my truth and be as honest with my situation and my feelings as I possibly could be.

However, turning my situation into a positive experience didn’t lighten the load I was carrying regarding my end-of-life wishes and speaking to my loved ones about them. I knew in my heart the conversation needed to happen, and I was dreading my family’s and friends’ reactions.

A hard and emotional conversation

There were tears, hugs, and even laughter, but we got through it like we always do: together. It was refreshing to know that even though the topic was upsetting and emotional, we could still discuss it. At the end of the day, I was confident that my family would honor my wishes.

Talking about the end of anyone’s life is never easy, but in some cases, it’s necessary, and for some, it may need to happen earlier than for others. Take everything one day and one task at a time. Before you initiate conversation, make sure you are emotionally comfortable. Try to be straightforward and articulate exactly what your wants are. Expressing those wants in a loving way is your best bet.

Sometimes the tough conversations are the ones that make the most impact on your hearts and minds. They’re the conversations that bring you closer to your loved ones, forming a forever bond that can’t be broken.

I’ve come to terms with my illness and my eventual fate. No, I’m not giving up, nor am I ready to die, but if something happens to speed that up, my family and I will be ready for whatever outcome presents itself.

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


Ilene Wax avatar

Ilene Wax


Jen avatar


You are such a wonderful advocate for the Scleroderma community and I look forward to all of your articles. My daughter was diagnosed when she was 17 (now 20).

Amy Gietzen avatar

Amy Gietzen

Thank you, Jen. I am sorry to hear about your daughter's diagnosis, but I am glad to hear she is pushing forward! I am sending prayers her way!

Alice Krehbiel avatar

Alice Krehbiel

Thank you so much for sharing your journey with all of us. Your heartfelt honesty is greatly appreciated!
Wishing you only the best,
Alice Krehbiel

Amy Gietzen avatar

Amy Gietzen

Thank you, Alice.


Leave a comment

Fill in the required fields to post. Your email address will not be published.