When your physical symptoms are mistaken as character flaws

The point of this article is not to shame anyone, so please don’t let what I’m about to share tarnish your opinions of my family. I acknowledge that parenting is an incredibly demanding and difficult task, and parents are just as human as everyone else, prone to mistakes. I don’t fault them for that, but I hope sharing my experiences will keep others from making the same mistakes.

Even though I was lucky to get the correct diagnosis at a reasonably young age, my rare disease was not well understood by myself or my parents. As a result, some symptoms of my disease were mistaken as character flaws and in many cases I was disciplined when I should have been supported, or outright not believed even though I was experiencing some truly scary medical events. I don’t believe it was intentional at all, but I experienced a LOT of gaslighting and undeserved criticism that took a really devastating emotional toll on me growing up.

My hope in writing this is to raise awareness for what can happen when a child’s illness is not taken into consideration when they are struggling. Your “lazy” kid might be experiencing physical symptoms. Your “unmotivated” high schooler who keeps falling asleep in class might be struggling with intense fatigue that could be managed by a change in medication or other forms of support and accommodations. Don’t always assume that your child is just having behavioral issues, it might very well be out of their control.

I have a handful of painful memories that I can now chalk up to poor knowledge about my medical condition, and I grappled a lot with whether or not to share them in detail. In the end, I’ve decided not to do that. It seems more personal than it needs to be, and would probably just come across as shaming the people involved. I’m sure venting about them would be very cathartic, but that’s something I can share with my therapist in private.

I don’t think it would be appropriate to share my experiences in detail in a public forum, but I can at least do my best to try to explain some hypothetical scenarios you may encounter as the parent of a sick child and not realize that what’s happening might actually be due to their illness.

My child can’t keep up on walks.

Are you noticing that your kid falls behind a lot or requires frequent breaks when you go out for a walk? I’m sure that’s very frustrating. Nobody likes to start and stop several times during a quick trek around the block.

My grandma, who has always been my greatest ally, opened up to me about how she regretted getting frustrated with me when I was very little, just old enough to go on walks with her, and I would really struggle to keep up like a child my age should have been able to. I would get tired so easily and have to stop frequently for breaks. 

I don’t remember this at all, but she told me how she would get a bit snippy with me at the time, and when she learned about my condition and how physically weak it likely made me feel, she felt awful about becoming frustrated with me at the time. Of course, I told her there was no way she would have known, and I don’t remember it anyway, so there’s no sense in holding onto that regret, but I do appreciate that she acknowledges that I was dealing with having a weaker body rather than being a lazy kid.

Before you automatically assume your kid is just being lazy, ask yourself if maybe there’s a physical symptom here affecting their stamina. If so, what accommodations can you offer your child to help them keep up? Even though you can handle a full walk, maybe it would be beneficial for them to bring a two-wheeled scooter with handlebars, or a little skateboard if their balance is good enough. That way, they are still getting some exercise, but they can get some relief from walking the full distance if it becomes too much for them.

My child falls asleep in class.

I struggled a lot with this. It wasn’t for lack of motivation or interest in learning, I actually loved school, and I still have a craving for learning new things. I would be diligently taking notes in class one second, and picking my head up off the desk the next. It was completely out of my control. 

I remember one time in high school when my history teacher became so frustrated with my inability to stay awake that he instructed me to get up from my desk and remain standing for the duration of the lesson, using a bookshelf at the side of the room to take my notes. Being singled out in front of all of my classmates was embarrassing enough, but even worse was the fact that I almost fell over because I started falling asleep on my feet. When he noticed this, my history teacher became angry and sent me to “in school suspension” for disciplinary action. 

This was a revelatory moment for me, because it was then that I realized that my struggle to stay awake must really be a medical problem. Up until that point, I had always been accused of just being lazy and unmotivated, but I was really trying hard to do well in school, and yet I STILL struggled to just stay awake. I remember writing in the self report form I had to fill out for in-school suspension: “I think there’s something wrong with my body. I can’t stay awake”. I was so frustrated with myself that day that I remember crying.

Nobody followed up with me about that note on my self-report, but after that incident, I began looking for ways to keep myself awake, which led me to start taking coffee to school. I already had a reputation among a lot of the teachers and staff as the sleepy kid, so even though we weren’t technically allowed to have coffee in class, they let me get away with it. One teacher’s aide who was a stickler for the rules tried to tell me it wasn’t allowed, but the teacher stepped in and told her it was fine. She knew I needed it. 

It did help a lot, even though I know now that it wasn’t really healthy for me to rely on caffeine when the real issue was actually several of my hormones being out of balance. I was essentially overclocking my body just to get through school. It did work out for me in the end, even though It took me an extra half of a year to graduate. There were some other life factors that improved my performance in my last couple of years of high school as well, but I definitely attribute a lot of my success to Mr. Coffee.

I can’t say I really recommend juicing up your kid with energy drinks to make it through the day, but the moral of the story here is to consider that your kid might be struggling with intense physical fatigue that they can’t really control. If I had better knowledge of my medical condition at the time, my fatigue could have been addressed by discussing it with my doctor and adjusting my medications. Since I lacked the knowledge that I should request that help, I resorted to caffeine out of desperation. It worked in the short-term, but could very well have become harmful. In fact, coffee is explicitly stated as a no-no for folks with adrenal insufficiency because of its known interactions with cortisol in the body. I was harming myself to help myself. That being said, I’ll admit I still drink a lot of coffee, even though I know better.

If your kid struggles like I did, talk to their doctor about it. Don’t automatically assume it’s a behavioral issue. Blaming your child for something they cannot control can be emotionally devastating to them.

My kid sits down a lot for things that most people can do while standing.

This is an “issue” that I find ridiculous to shame your kid over. I remember several times growing up when I was told in a very annoyed tone to “stand up” while tying my shoes or picking up toys. I didn’t understand how to explain why at the time, but bending over or reaching for something high overhead actually causes me to become quite dizzy and uncomfortable, so I would sit down to reach my shoelaces, or pick up toys in one section of my room at a time rather than repeatedly bend over, pick something up, put it away, and repeat across the entire room all at once. 

Other kids my age could bend over and be just fine, but it made me dizzy and I simply didn’t know how to explain that to anyone. When my teachers or parents criticized me for not standing while doing certain tasks, I just assumed that everyone must feel that discomfort and there was something wrong with me for not being able to cope with the sensation. Now, I am aware that there are several aspects of my condition which contribute to vertigo, but my parents and I were oblivious to this at the time and so they chalked it up, again, to “laziness”. YEESH, I hate that label so much. Can we just delete that one from the collective vocabulary, please?

If you notice your kid avoiding bending over or struggling to complete tasks that require them to reach up high and overhead, it might be a good idea to consider their diagnosis and look into whether or not it can impact their balance or cause dizziness, and allow your kid to make reasonable accommodations without shaming them for it, even if it takes them a little bit longer to do things.

My kid failed P.E. class.

I’m just going to direct you to this article I wrote on this topic. There’s so much to cover here, but long story short, just have a serious, candid discussion with your kid’s doctor about their potential limitations before you get upset with your kid for struggling. Honestly, that last sentence really just sums up this entire article.

I think my kid might be faking being sick to get out of doing things.

Insert sound of brakes screeching here. Hold up. Stop right there before you gaslight your kid. Yes, sometimes kids fake being sick, it’s a trope in every sitcom for a reason, but read these next words very carefully. If your child has a diagnosis that includes the reality that they will experience frequent bouts of illness, it is way more likely that they are telling the truth when they say that they are not feeling well. I understand that this can be frustrating, especially with “invisible” illnesses, but consider this; what is more harmful, letting a child get away with lying about being ill, or accusing them of lying when they really are sick and in need of rest and support? The latter results in your child feeling helpless and might lead to a destructive habit of gaslighting themselves. When you’re accused of being a liar enough times, you start to wonder if it’s true, even if it isn’t. Needless to say, that doesn’t help very much with mental health and feelings of self-worth.

If you’re concerned about your child missing too many classes, have a discussion with your child and their doctor and find accommodations that you can reasonably work with. Do everything you can to help your kid keep up with their peers from home if you have to. If COVID did anything positive for us, it was the expansion of access to school from home. Sometimes your kid’s illness is going to be genuinely too much for them to be able to attend class even virtually, and I hope you will be able to respect that while also doing your best to encourage them to try to push through what they are able to and attend class from bed if they can handle it. Sometimes they won’t be able to, and that’s okay. Let them rest. Every child is going to be different. Some cases are going to be way more severe than others, and some days will be better than others in many cases. 

Ultimately, I do believe it is best to just believe your child when they say they aren’t feeling well, and offer them reasonable options to proceed with based on their abilities at that moment.

Let them be a part of the conversation. When you have an illness that impacts your ability to function, it can feel pretty helpless. Giving your child a sense of autonomy in this situation is empowering, and having someone in their life who acknowledges that their illness is having a real impact on them is extremely validating and that is so, so comforting. Feeling seen and understood makes a huge difference.

I know these are only a few small anecdotes pulled from one person’s experience, but I hope it was at least a little illuminating. I would like to invite readers to comment with their own experiences growing up with physical symptoms that were unfortunately misconstrued as character flaws. I’m sure I’m not the only one who has experienced this, and having more examples might keep the same thing from happening to someone else.

This article doesn’t even get into the many complicated nuances involved in growing up neurodivergent, and I want to acknowledge that symptoms from those conditions can be even harder to identify and address. I’m afraid I don’t have any experience with this firsthand, so I would love it if you would like to share your stories as well!

I want to end this on a positive note and give a shoutout to my grandma. She has always been my greatest ally when it comes to my health, and I want to emphasize how important it is to have someone like this in your corner advocating for you when you’re struggling with a medical condition that isn’t well understood by most people. I think she was the only one who really took my diagnosis seriously. As a matter of fact, after I was officially diagnosed (this was before HIPPA laws were enacted), my endocrinologist took the initiative to call her himself and explain my diagnosis and treatments to her in case my parents didn’t fully understand, and it’s a good thing he did. She actually listened and made sure to do her best to make sure I was always taking my medications correctly, and she put effort into understanding how my condition could physically impact me. 

If it wasn’t for her carefully ensuring I took my meds, I might not have taken them correctly or missed doses and made myself feel sicker without knowing why. I remember her asking me about my meds once and I told her I had missed some doses of something less important (I think it was just a calcium supplement I need for my poor bone development) because we had run out and simply hadn’t restocked yet, and she was LIVID. Well, as livid as that sweet lady can be, but man I remember she was mad, and made sure my parents got those meds that day. Having an advocate like that in my corner was probably more important than I realize even now, and I am so grateful for her. Be that person for the sick kid in your life. I can’t adequately express how much she means to me.

I think that when I was a kid, everyone who knew about my condition just wanted me to feel like any other “normal” kid, so we didn’t talk about my disease much at all, but I really wish I had more support when my condition was having an impact on my ability to function like my peers. Knowledge is key, so please do your best to educate yourself on your kid’s illness. Don’t just act like it doesn’t exist so your kid can have a “normal” childhood. That only serves to further stigmatize chronic illness and disability overall and causes your child to blame themself for things that are out of their control. 

We can do better than that.

Featured Photo by Gustavo Fring