Dealing with an Invisible Illness while Looking Adorable
Adeline struggles with chronic medical issues, multiple diagnoses, and happens to look “normal”. Sometimes, this can work to our advantage. In public, when she is not connected to her TPN or GJ feeds and her shoes cover her braces, we can fly under the radar and avoid those glances, stares, and (sometimes) rude comments that I try to spin into an opportunity to educate. But most of the time it can be frustrating, unhelpful, and sometimes a struggle to get her medical or early intervention team to see the entire picture. I wanted to share a little bit of what we experience and some ways you can be supportive to a family/person who deals with an invisible disease or disability.
I hear this comment the most. I hear it from dear family members, from her entire medical team while we are inpatient, from friends, strangers, therapists, you name it. We can have a horrible night; vomiting, intolerance of feeds, crying, no sleep for the entire family, and in the morning Adeline is usually happy. She is having a break from her feeds, if she has a fever it’s at its lowest, and this is a good time for her. You add an audience (such as a GI team doing rounds), and she will increase the charm ten-fold. They'll walk in and she'll smile, wave, and show them all her skills - this can be quite confusing for the team when I tell them about our rough night. As a parent, (John doesn't feel this way), I personally feel it undermines her suffering and struggles. When a parent shares that their child is not feeling well and the response is about her looks, it can feel invalidating.
Typically, I hear this comment from early intervention therapists; OTs, PTs, SLPs, Special Educators, etc. who have read Adeline’s file and are meeting her for the first time. They say it almost immediately, before they have begun any sort of interview or assessment. Most of the time, I don't see it as a compliment, but interpret it to mean, “based on her birth and medical history we thought she would appear more disabled then she is.” I am sure no one means any harm by it but I often feel that their attitude and expectations shift a bit based on this first judgement of her based solely on appearance and affect. As a previous special educator, who sort of specialized in educational assessments for children with autism, I'm even more aware of this. Often children on the spectrum are beautiful, have perfectly symmetrical faces, big eyes, and even super smart in specific areas. Yet my assessment results would often paint a different picture in terms of that assessed skill. It's important for providers to try and hold off their final judgement until records have been reviewed, parents have been interviewed, and the child has been assessed.
As some of you may know, Adeline had an undiagnosed intestinal malrotation until she was 6 months old. About every 10 days or so with eating, Adeline got distended, stopped stooling, and vomited incessantly. Often the immediate response to this type of food intolerance would be to stop her feeds, and keep her NPO. Adeline responded fantastically to NPO and providers would often come to check on her, during the NPO, and dismiss a lot of what John and I were reporting. “I thought she would look worse,” would often be the common theme of the stay. Even while in the emergency room they'd say, “She looks so good, you probably aren't going to be admitted.” Um…what?! John and I had to convince medical providers, on multiple occasions, to look further, to admit her, even to do exploratory surgery (twice!!!) because of this issue. For parents, you feel crazy when you're requesting admission, or asking for tests, or even asking them to do surgery!! You feel like you want there to be a problem, or maybe you can't ever be satisfied that things are going well. It's a hard feeling to deal with.
This comment I've heard from friends, family, and providers who know Adeline well. Instead of asking you how things are going, they start off with, “So, things are going well”. Hmmm…how should I answer this question? I think to myself, We've been in the hospital almost monthly for the past 20 months, we've had 8 surgeries, she still vomits every day, she keeps needing more and more supports in order to get all the nutrients she needs to live, we are at endless doctor’s appointments and early intervention therapies… I usually respond with, “Some things are going well!” and then sort of start back-tracking into all the issues we're having. In my opinion, they want things to be well for you, hope they are going well, and she looks good so all of that must be true. I mean, I did just post a picture of her smiling down at the river playing in the mud. In truth, this type of comment often makes me feel like I'm being negative about Adeline. Instead of being able to share that some things are good, but we still have a lot of struggles, it puts me in a weird dynamic with that person who hasn't even asked me a question, but rather made a statement about her health that may/may not be true.
This comment most frequently comes from a stranger. They see a feeding tube, or see you in the hospital, public or wherever and are brave enough to ask questions. I love when people take the time to understand, and hope that it'll bring more awareness to all that Adeline fights through. Once I give them a 1 minute condensed summary of her health the response is, “She doesn’t look sick!”. That usually makes me pause for a moment. What do you say? “Well she is!” Usually I make a light joke about it being an invisible illness or something to that effect.
Ok, enough complaining about all the people who are most likely well-meaning and care about my daughter. How can you make sure you do not end up on my list of “Things Not to Say”? Click here to learn "10 Ways to Support Someone with an Invisible Disease."