2 Steps a Parent Should Take After Being Diagnosed With a Chronic Illness


One night, I ran down from my upstairs bedroom to comfort my 2-year-old who was crying about a bad dream. I got him settled and headed slowly and carefully back up the stairs. Things like this had become very difficult for me over the prior six months. I was depressed and confused about why I felt so awful all the time. “Does everyone who has three kids just feel this way,” I thought, “and I, for some reason, just can’t handle it?”

These thoughts left me feeling completely unmoored: I knew I was tough and strong. I had a brief career as a professional ballet dancer. I was near the top of my honors class when I graduated from business school. I was the friend who held people together. I was the kind of girl who could and would push through anything, the one making all the plans, the one with energy and ideas to spare. Not so much now. When I got to bed, I could feel my heart beating hard and arrhythmically. I woke my husband, and he could feel it, too.

With that new symptom identified, my little medical mystery finally began to unravel, and my new doctor was able to diagnose me with postural orthostatic tachycardia syndrome. He and my other docs confirmed this would most likely be something I would deal with for the rest of my life. “No!” I thought. “How can I possibly be the mom I’ve always wanted and planned to be if this is going to last forever?”

POTS keeps me on a short leash. We have to be careful about activity levels, postural changes, stress, diet, hydration, even temperatures. I would not get to be the active, hostess-with-the-mostest mom I had wished to be. Suddenly, I had to try to envision a whole new way of being. Illness can be a huge disruptor. I think most of us crave comfort and order in the face of disruption, but when you are at the center of it, it can be nearly impossible to recreate the conditions of comfort and order you enjoyed before.

Being a pretty can-do kind of woman, I was eager to charge forward and try to figure out how best to run my home and family as this new, sick person, and relatively quickly, I did form new routines and made huge adjustments. While it’s very tempting to find a “new normal” as quickly as possible, I don’t think that works. Friends and family will be ready to gush about all their great ideas for how you ought to now live, but they may be forgetting the important fact that you have, indeed, changed — no small thing to face.

It’s OK to need some time to just sit and stare at the new surroundings (and your new personal interior) before you begin to plan how you can get up and move along (not on). Empathy and grace from yourself and others for yourself is essential. I wish I could say that my stages of grief and the reintroduction of order happened on some kind of predictable schedule, but they didn’t. I can say that giving myself time for both, stumbling my way ahead, has been a necessity, and that the time required has been much longer than I expected.

I see a counselor weekly; doing so has been the best way for me to process the ways I and my circumstances have (and have not) changed. Although, at this time I do feel weak and inadequate, I also feel strong for being willing and able to admit I need someone’s help. Processing loss is messy and painful, but I believe that pain and change can be used to make us richer and more glorious. Working with a counselor has done much to improve my view of myself — not because she forces me to look for the bright side, but because she has helped me to give myself credit for what I’m going through.

If you are facing a new illness or change that has completely rattled your world, this chronically ill mama of four recommends taking these two vital steps before you do anything else:

1. Take the time you need to make an inventory of what has been lost and what remains and the requisite time for mourning. It is not just “OK” but important to cry and even to be angry!

2. Find a counselor. Churches and other community organizations can help pay for counseling fees, and many therapists have sliding payment scales for those with financial limitations.

If you can’t find a therapist, simply identify one good friend who you believe has the capacity to give you time to process and listen well. Make sure this friend knows you aren’t coming to them for solutions per se but for empathy. Most close friends are able to identify patterns in our thinking, and those may be helpful for them to point out to you.

Illness can change you, but it doesn’t get to take center stage. Everything around you, your very body, may indeed change, but at the middle of it all is you. Your children just need you, and they can and will adjust in ways that will astound you.

For parents with atypical challenges, it’s tempting to feel like our children are missing out, and sadly, in some ways, they might. But we can model healthy sorrow and anger for them, and in the end, we will all be stronger.

Portions of this story originally appeared on JeskyBera.com.

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

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