5 Questions You Should Ask a Chronically Ill Person

Another image of friends out socializing pops up as I log onto social media. Longing fills my soul. It has moved way beyond FOMO. I no longer have that fear I am missing out. There is no doubt about it. I have long accepted it. I am missing out.

I’m four years into a disease (chronic fatigue syndrome/myalgic encephalomyelitis) that has taken so much from my life and I no longer anticipate the invites. At times, I no longer expect to be thought of or considered to be much more than my disease. My life has been categorized and contained. I am the friend/colleague/family member with the chronic illness. The stereotypical view of my life as it now exists has been formed, and that is the view that remains day in and day out.

Yet, my life with a chronic illness is nowhere near stereotypical. My capacities and my abilities vary day to day, month to month, and year to year. What you saw of me while I was trying to maintain a job and live independently is a completely different me than what you may see now. Last month I struggled with balancing life amidst welfare agency work expectations, the month before was spent fine-tuning a new medication that made me sleepy all the time, this month it is a working on increasing my exercise, while trying to figure out why I have this random abdominal pain. Each month has looked completely different. Each month there is a new set of challenges, a new set of symptoms or a new set of physical, emotional and cognitive capabilities.

What I couldn’t do three years ago, I can do now. What I struggled with last week is now a different battle this week. What you saw in a bad month or a day isn’t the whole story.

So, please ask.

1. Please ask how we are. Please ask how we are today. Often our looks don’t match the way we feel. We are masters of disguise. We have mastered the concealer for
the under-eye bags. I wear pretty clothes when I go out, as it takes the same amount of energy to dress in something nice as to put on my pajamas. Plus, I get so bored with wearing the same comfortable, warm, loose-fitting clothing day in and day out. A friend sent me a text on Wednesday just asking how I was and letting me know I was on her mind this week. She had no idea I had been feeling like rubbish all week and was really disheartened by it all. That text meant the world to me.

2. Please ask us to social events, even though we may have said no in the past. Please ask how those social events can be accessible and doable for where our bodies are currently at. Maybe the restaurant needs to be intolerance friendly, maybe we just need a lift, or maybe an earlier dinner would work better. For me, a one-on-one catch-up for coffee with a friend adds life to a boring, repetitive week and is manageable for my cognitive and physical energy levels.

3. Please ask us to help, serve and contribute to society. In families, in churches, in schools and in workplaces. Please ask what we have to give, whether that be cognitive input, some administrative help or some hands-on support. It may not look typical, but ask away. Please ask what barriers are currently in place, and help come up with ways to conquer those barriers. Please ask how much notice ahead of time you might need. I can make things work that I know are on a set day and time weeks ahead. I will plan my energy and my resources around that event. Likewise, I may have an abundance of energy one week, and so may be able to step in to babysit, help out or go get a coffee at the last minute.

4. Please ask how you can help. Please ask how you can care for us. Four years on,
and I still need to resort to a banana for dinner if the freezer is empty of frozen meals. After church on Sunday, as my city faced a torrential downpour, a friend asked if he could go and move my car to the front entrance for me. Yesterday, I was actually feeling OK to make it to my car parked 30 meters away in the accessible parking spot. Yet, merely three days earlier, that 30 meters would have been torture, and that offer of help would have been a huge blessing.

5. Please ask the hard questions. How are you emotionally and mentally going at the moment? How is your faith? What things are you struggling with? Where are you
having difficulty finding joy? How are you going financially? How are you finding the endless doctor traipsing? How is life actually going? These questions need asking. I need people walking the messy parts of this journey alongside me.

Please ask, because assumptions hurt. Assumptions leave you lonely. Assumptions can leave you questioning your worth, your capabilities, your gifts, your personality and your intellect. Please don’t assume. Please ask. There is so much grace, love, understanding and acceptance in the simple task of asking. And, yes, sometimes the answer will be no, not this time. Sometimes the answer will be messy, complicated and uncomfortable. But the answer could also be yes, and hit the nail on the head, and more than one life will be enriched because of the simple task of taking the time to just ask.

Disclaimer: You never need to ask about chocolate or coffee — they are a given for me and will always bring an abundance of joy into any of my days.

Follow this journey at Make It, Bake It, Fake It.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.