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5 Sneaky Symptoms of Chronic Illness I Thought Were 'Normal'

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I first want to preface this by saying that it is not whatsoever a dig at my parents. Maybe it was my underlying neurodiversity, maybe it was the anxiety I have experienced my whole life, but due to believing all of these things were normal and that I just fundamentally couldn’t cope with things that other people were quietly dealing with, I never discussed most of these problems. I kept my suffering to myself for most of my life, I thought I was alone and the only one not coping in a world of people feeling the same way I did.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

As you may have gathered, I have a slew of diagnosed and undiagnosed health conditions (some of which seem to have baffled medical professionals!) mainly, I deal with severe endometriosis and adenomyosis, postural orthostatic tachycardia syndrome (POTS), and something that appears to be hypermobile Ehlers-Danlos syndrome but isn’t quite diagnosed yet. My life is often a mixture of pain, brain fog, and more pain. I spent a vast portion of my childhood scared and confused but too anxious to speak about the issues I was facing. The issues I did mention left doctors fobbing off my mother with nonsense diagnoses and reasoning that didn’t make sense. So, here are five things that I thought were normal until I realized I was sick.

1. Shaking.

I have always been a shaky person for as long as I can remember. My hands rustle like leaves in the wind and generally aren’t stable. I remember as a small child thinking that if I could just concentrate, if I focused hard enough, I would be able to keep them still. Although I had seen people with shaky hands, I thought it was something I had to learn to control. I can remember spending hours practicing and trying to keep my hands still. I thought the constant shake in my body was nothing more than a lack of self-control.

2. Excruciating pain in my hands and forearms when writing.

Now from what I understand, it is quite normal to feel some pain in your hands when you have written for a long time, however, I would begin to get excruciating pain just a couple of sentences into whatever I was writing. School was hell. Day after day just writing for 6 hours, my forearms would burn and scream at me to stop, but of course, having heard that people often experience some pain after writing for an extended period of time, my brain made me convinced that I was just lazy, and if I couldn’t keep going then I was nothing but weak and a disappointment.

3. Always feeling exhausted and unable to keep up with my friends.

I struggled with constant exhaustion, paired with the knowledge that my friends didn’t feel the same way and were able to go out day after day after day. The feeling of heavy fatigue but not wanting to let anyone down or disappoint them was almost too much for me, and thinking back I think that it was a large contributor to the struggles I had with my mental health. I exerted myself so far beyond my capabilities, and then when I was 15, I experienced extreme burnout. I kept trying to push myself to be the person I knew people wanted me to be, but doing so while being filled with this intense amount of pain and fatigue was unbearable.

4. I was constantly sick.

I could not list for you the number of times I was on antibiotics as a child. Throat infections plagued me over and over and over again. I remember so many late-night trips with my mother in my pajamas to urgent care because I was sick, fevers and big bottles of Lucozade, and cream of chicken soup. When I was 13, I got hit by an illness so bad that I slept in the downstairs of our home for almost two weeks. I was so weak and unwell I could hardly walk, let alone make it up the stairs, and I couldn’t eat. I remember my grandma watching me and spoon-feeding me soup while my mother was at work, my aunt making me hot water bottle after hot water bottle, and my mother buying me countless small pots of jelly (jello) when that was all I could eat. Sometimes I wonder if that was the illness that triggered my ongoing issues. It’s hard for me to remember much of my life as a small child, but I don’t feel like I ever truly recovered from that.

5. Incessant pain in my legs and hips.

My legs have hurt for as long as I can remember. I can remember being a small child, no older than 5 or 6, and struggling to keep up on school trips because of this ongoing pain I felt in my legs and hips. This was one of the only issues I did bring up to my parents, I remember countless trips to the hospital and the GP because of the agony I was feeling in my hips, only to be told I had “irritable hip syndrome” — something I have never heard of in any other setting before or since. I would fall a lot due to the instability in my ankles and knees, so many hours were spent waiting for x-rays on my, yet again, severely sprained ankles. When I was little, I used to pop my kneecap in and out of place to freak out my friends, unknowingly dislocating and subluxing my knees, unknowingly causing knee damage which still continues to worsen. It was just my weird party trick. I could turn my hand the wrong way at the wrist too, would dislocate my thumbs at the drop of a hat. People would be weirded out, but no one ever identified that as a problem, all the while I was causing myself more and more damage to my joints because I thought it was weird and cool.

Since I became a parent myself, I have lived in constant fear of my own children feeling like I did. Although it was not my parents’ fault in the slightest, with my own lived experience, I think that I have been fortunate enough to understand when things aren’t “normal.” I watch my daughter walk and see her roll her ankles the same way I do, watch her cry in pain at 6 years old because her knee hurts so much for no reason, She is under a pediatrician to look into these things now, and I am glad that at least from all my own experience, I am able to make a difference in her life before she has permanent damage. Parents, make an open dialogue with your kids, let them know that there can be issues with basic things, and please, ensure that your children know: the normal amount of pain is zero.

Originally published: October 13, 2021
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