I was diagnosed with a chronic illness later than many; I was almost 30.
It’s never going away, there’s no cure, no “fixing it-” just an everyday struggle to try and maintain, to not get worse. Not get worse by using things like, you know, brain surgery. Or toxic, birth defect-causing medications at super high doses.
My illness created near instant tension in my marriage, supportive husband or not. Suddenly, “In Sickness and In Health” was hitting just a little too close to home. I now needed help–per Dr.’s orders–with the simplest of things. (What would you do if you were told that regularly carrying anything heavier than a gallon of milk could cause long-term damage, like paralysis?) And once we’d decided it was time to turn our party of two into a party of three? Well, the tension only mounted as our doctors told us that my hormone levels–among other things–had also been compromised. Illness: 3, Erin: Zip.
Eventually, finally having that baby boy we were waiting for posed its own set of challenges. I wasn’t medically allowed to push–so that meant natural labor was out. Except I also wasn’t allowed to have an epidural. Or a spinal block. Chronic illness meant that squishy little face was born into a cold operating room full of doctors and nurses–strangers who I thrust my camera upon in pre-op, begging them to take pictures of him coming into the world–while the husband was deployed and I was unconscious under General Anesthesia. At birth, he weighed 7 pounds, 10 oz- already several pounds more than I was “allowed” to carry.
Mac is a year old now. And I feel guilty every day. Guilty that I leave him in his car seat an extra minute so my husband can come outside and carry him in. Guilty that we’re watching Sesame Street again instead of being across the street strolling through Four Corners Park because It’s. Just. A. Bad. Day.
Guilty that our “play date” is in yet another doctor’s waiting room. Guilty that I can’t get down on the floor with him to bang on those pots and pans like he wants me to. That even if I could–today–I’d think twice about it because just that one seemingly insignificant action might make it next to impossible for me to get out of bed tomorrow.
But mostly I feel guilty that this is the genetic path I’ve cut for him. That this always-smiling whirlwind of a boy might someday be doomed to crippling back pain, numb limbs, freight train headaches, and the ever present anxiety and not knowing that accompanies all of the above. And that maybe I won’t even be there to help him through it- just like I can’t be there on the kitchen floor.
When writing this post, I reached out to friends and strangers on social media, hoping to be able to share their fears and thoughts on being a chronically ill parent. Their responses,dozens of them, shared the same themes:
“Feeling sick becomes so normal, I sometimes forget that I do feel sick or not well, and THAT might be the reason I have zero patience with my children or husband. And there are so many things I want to do. I emailed with my husband for a good hour one day, planning a kayak trip. After the 6th email, I remembered, ‘Oh yeah. That’s probably not a good idea in the heat with my heart condition.’ And the sadness and anger I feel over missing out is almost (always, actually) worse than feeling sick.”
“I think the hardest part about [having a chronic illness] is that my son could have a predisposition to it. Even now, at the happiest time in my life, I still have times where I break down, and it can’t be helped. And, knowing that feeling, I’d be devastated if he had to battle it. People just don’t get it, and I almost think I’m getting judged like I’m a bad mom [for being sick] when I have a beautiful baby boy and a great life.”
“For me, the hardest part is worrying my kids will develop this disease. I also worry I’ll have an episode while I’m watching [them], and I won’t be able to take care of them.”
To those of you with a chronically ill Mama (Or Dad!) friend, I leave you with these links to help ease their burdens- both those put upon us by our illnesses and those we inflict upon ourselves, like that good ole’ guilt:
8 Ways To Encourage A Chronically Ill Mom
5 Things You Should Never Say To A Chronically Ill Parent
And for those of us parents fighting The Good Fight? 40 Ways To Entertain ‘Em… LYING DOWN!
I am not a chronically ill parent, but I do understand the feeling of “what if I gave this to my child” and spending countless hours at doctor offices. My daughter was born with a birth defect that required major surgery as an infant and she will probably have at least 2 more in her adolescence. She is the first one in our family to have this and I wonder all the time if it is in my DNA. Thankfully we are working with a genetics team to come up with a plan. I suggest someone in your position should have genetic testing done on your little one too. Not only can it help you build a plan and know what to look for, it could help find a cure or better maintenance program for people who have your condition. Good luck on your journey!
As a mother dealing with depression, I have had many times where I can’t do what I feel I should be doing. Although support from my husband is usually given, he can get frustrated sometimes. I’m still working on realizing what I’m expecting from myself is not always what others are expecting and I’m too hard on myself. I try my best to take it minute by minute if I have to, and ride out the bad times. I want to play with my child more and am jealous that my husband gets to be the fun parent. But, I do what I can, and give what I’m capable of at the moment.
You are an amazing example of strength for baby dubs. He is lucky to have you. Thank you for sharing!!! Xoxo
Check out the webpage for the comprehensive pain rehabilitation center at mayo clinic Jacksonville. It covers, and improves, all types of chronic conditions, not just pain.