The Part of Living With Chronic Illness That's Hard for Me to Talk About

Eighteen years — that is how long I have been living with my autoimmune chronic illness known as scleroderma. That is almost half of my life! Over the years I have learned how to cope and keep a positive attitude, even when I felt my worst. I’ve learned to educate myself as much as I can about my condition and treatment options, clinical trials, etc. But even after living with this disease for most of my life, it’s still hard at times to speak about when my disease gets worse and I have to think about end of life care, wills, funeral arrangements, health care proxies and last rights.

How does one even start to strike up a conversation with your loved ones about when you’re gone?

I use the words when I’m gone because I know its not an “if” situation. My disease is progressive with no cure in sight, so it’s not and never has been a matter of “if.” It has been since the beginning a matter of when and how long do I have left to make memories and imprint my life on my loved ones’ souls, so they won’t miss me too bad when I’m gone.

It’s definitely not easy learning at 19 years old that the illness you have is going to eventually take your life. At first I was in shock; how could this be my new normal? Why did this have to happen to me? What did I do for this to happen? All of these questions ticked through my mind daily. After the initial shock came anger. I was downright mad! What give this disease the right to ruin my dreams and my body? Who says there won’t be a cure in a year or two?

Lastly my emotions landed on acceptance. OK, I have this. It’s not going anywhere, so how is the best way I can deal with this?

I decided I wasn’t going to be a victim of my circumstances. I was going to be a light for others going through similar situations and felt alone. I was going to be an advocate.

So that’s exactly what have been doing for years now. However, turning my situation in to a positive experience did not lighten the load I was carrying regarding my “end of life” wishes and speaking to my loved ones about those tough decisions.

I finally came up with a game plan on how best to go through all of my fears, concerns, paperwork and wishes concerning my eventual passing from scleroderma. I decided to call a family meeting and speak to all of my loved ones together. It was a very hard and emotional conversation. But it was refreshing to know that even though the topic was upsetting and emotional, we could still discuss it.

Talking about the end of anyone’s life is never easy, but in some cases it needs to happen, and for some it may need to happen earlier than others. Take everything one day and one task at a time. I have found it can go well to make sure you’re comfortable with the conversation before you have it and try to be straightforward and articulate exactly what your wants and wishes are in a loving way. Sometimes the tough conversations are the ones that make the most impact on your hearts and minds. 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 it.