I Used to Be Someone You Could Count On

I used to be someone you could count on.

That was a core part of my identity that I watched gradually slip away. It’s something I wrestle with to this day. Chronic illness changes so many aspects of your life, including parts of yourself you never expected to lose.

For most of my life, I was that person who would show up. No matter the time of day or day of the week. Whether my support was planned in advance or needed on the spot. If you reached out, you knew I would be there for you.

These days, I'm uneasy making plans of any sort. Forget about plans for anything outside in the heat or that will require standing for a long time or walking long distances. I simply don’t make those plans anymore. But now, I even hesitate to agree to business meetings or a simple coffee catch-up. I’m realizing as I write this that saying no upfront is easier on me than canceling.

When I do say yes, it’s always, “yes, unless.”

Yes, unless I’m too lightheaded to drive.

Yes, unless the nausea is too strong.

Yes, unless one of my children with chronic illnesses has a flare-up or needs my assistance.

The ‘yes, unless’ is often more due to my role as a caregiver. I still push myself through my own symptoms much more than I know I should. But I’m the mom.

I’m the one who best understands their symptoms and needs. I’m the one who best puts their minds at ease. So, when I know my presence will ease some of their pain, discomfort, I will be there for them.

There are so many examples I could share. When my kids were young, I was the mom that other moms counted on. When they had to be at work early, I would get their kids on the bus. School is closed on a weekday? Playdates at my house!

Here’s one that really exemplifies how drastically things have changed. When my son's best friend had his tonsils removed, his mother was only able to take the day of the surgery off from work. So, for the next few days she would drop him off at my house in his pajamas and he would spend the day recovering on my couch. My kids were in school so it was just me and him until they got home. My normal routine and commitments took a back seat that week so I could spend my time caring for him.

Today? I literally don’t even invite people into my home. Why? The biggest reason is because with so much chronic illness living here, someone is almost always having a bad day and having extra people in the house simply makes it worse. It’s also become so much harder for me to keep the house clean and well stocked for impromptu visits. And planned visits now add so much stress as I anticipate the need to clean well, shop, prepare food, and all of the little things we do when we have guests.

There are still times I catch the offers falling out of my mouth before I think it through. When a friend's air conditioning goes out and it’s 95 degrees, I immediately offer for them to come to my home. Panic immediately strikes as I mentally start taking inventory. How is everyone feeling today? What else is coming up that we are physically and mentally preparing for? Will having people in our home have a negative impact on those plans? How will I be a good friend and hostess with all of the restrictions around what and how we prepare food?

I want to be the person who can always be counted on. Chronic illness, my own and my children’s, has diminished my ability and capacity to be that. I feel that loss deeply. I still have the instinct to immediately say yes. I still want to show up and help. That part of me hasn’t changed, but it has changed what I can actually promise.

I want to answer “yes”, not “yes, unless.”

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities. Click to submit: https://www.radiantrheumatology.com/patient-perspective