What I Wish People Would Ask Me as Someone With Chronic Illness

It is easy, when battling chronic illness, for the disease to take over everything about you. It is easy for it to become the singular focus of life, and for it to dominate the conversation, but often, it is the same conversation 100 times over the course of a day, week and month.

What is Parkinson’s Disease?

Imagine having the same conversation a dozen times in the course of the day:

How are you feeling?

Are you hurting today?

How’s the medication working?

Is that a sign of Parkinson’s?

What are the doctor’s telling you?

Are you getting better?

These and many other questions dominate my day. Depending on my mood, you will get either the long story, or the Reader’s Digest condensed version. It is touching that so many care about me and how I am doing, but some days there are other things I need or want to talk about too. Sometimes, these questions are ones I need to share about:

“How are you really doing — don’t give me just the throw-away answer?”

Sometimes, I give a quick, shallow answer to the question “How are you doing?” because I am not sure the person really wants to know. It means so much when people dig a little deeper to discover where I really am. Some days I am good, others I am not. Somedays I am hopeful, and some days, depression and loneliness are kicking my butt. Either way, if I know that you really want to know, I will tell you when you dig deeper with me.

“How is your wife, and how can we help her?”

She bears and incredible burden, and many times is in the shadows, forgotten. Slowly, she is having to do more and watch me to see if new problems are beginning, as all the while, she watches me become a shadow of who I once was. This takes a toll, and I worry about her — it is nice when I know others think about her too.

“How are your children handling this, and is there something we can do for them?”

It is scary for a kids to be forced to deal with this, and hard to watch your father decline. It is nice to know that others care about my kids and are looking out for them. Sometimes, I need to let others know how they are struggling and then how they can be helped.

“How is your family holding up?”

Our family dynamic has changed drastically with my diagnosis, and is probably unlike most. As a husband and dad this is hard to watch, and sometimes I just need to share and be encouraged that we can do this and we will make it through, because somedays, it does not feel like we will.

Sometimes, it is nice to talk about other things too (like things I am doing or some of my interests). For example:

“What books are you reading?”

“Did you see the latest ____ (movie, show, etc.)?”

“What is the latest Star Wars toy you have gotten?”

“What are you writing about these days?”

“Tell me about the trip you just took?”

These are just examples, but when asked, I will most definitely answer. When people talk to me about these things, it reminds me that I am more than just this disease to them. I’m not Charles, the “Parkinson’s Preacher,” but just Charles, a friend. It helps me remember that there is more to my life than the disease I am battling and helps me regain some sense of normalcy.

I know, it is complicated — sometimes I want to talk about, other times I don’t. Sometimes I go in depth, sometimes not. If you think it is complicated and confusing, well then, welcome to chronic illness — those of us that have it feel these conflicting emotions daily.

Just bear with us and keep reaching out to us. No matter what vein your questions take, it means so much that you ask and try to understand where we are and include us in your daily life. Thank you most importantly for checking in on us. No matter what the fashion, it means more than you will ever know.