my condition is not related to mental health and my body image nor is it self-induced. above all, it is NOT something to aim for.
i’m a 16 year old & 10 month girl and i weigh about 79.8 pounds at 65 inches tall. the heaviest i have ever been was around 84 pounds, and at my most recent low point i weighed 77.
i have never been hospitalized for my weight, i have been extremely skinny my whole life. none of my organs have shown signs of failure, my hair is healthy, i do not skip menstrual cycles, and i go to school 5 days per week without my weight getting in the way. somehow i don’t even look that emaciated.
i eat as much as i can, 3 meals a day plus snacks.
there are other physical issues such as hEDS, POTS, and pectus excavatum (i call it the Dent) that prevent me from being active.
before anyone gets skeptical and does the calculations, i am aware that i’m at the 0.00003rd percentile for my demographic. i am quite a statistical anomaly which is actually annoying because my doctors have no idea what they are doing with me.
i figure i’ve adapted to this weight in some way if i can function at the level that i do.
Comments
Do you have a diagnosis related to your weight?
Do you want to gain more weight? What do you eat on a daily basis?
Favorite snack?
Have your doctors ever tried any extreme measures to help you gain weight?
Are you not planning to gain some pounds?
What’s your favourite pancake topping?
You have Pectus Excavatum too?? Ayeeee twinnnn
Have your doctors verified (preferably twice) that you don’t have hyperthyroidism?
Do you have any advice on getting yourself to eat more, or high-calorie snacks? I’m also underweight (ARFID) and it’s so hard to find advice on Gaining weight.
How on earth do you shop for clothing? That has to be very challenging. When my youngest was your age, we had to shop for jeans that were 00 and extra long, which were barely long enough. With your height and weight it must be tough. Also, how are you doing for temperature regulation? Are you okay, or do you get chilled easily.
Do you use your “dent” for anything? My friend growing up had one and would pour salsa in for chips while watching TV lol
My partner also has hEDS and POTS, and was chronically underweight for most of her life. She was finally admitted to the hospital when a nutritionist took her seriously and referred her to a dietician. We live in the UK so the wait times were a bit longer but thankfully it was all free. She has also never had an official diagnoses for why she couldn’t gain weight.
Have you tracked your calorie intake? She ended up needing something like 400-600 more calories than she should to actually put on weight, and it’s all still a total mystery as to why!! I know there are other related symptoms to both, and she couldn’t burp which made it more difficult to eat.
Can you manage much activity at all? Or is it just sports that’s too much?
Do you try and drink pedialyte or some other type of supplement to gain weight?
That’s interesting what a unique life you must lead as a result, I hope it’s impacting you in many positive ways. Have you considered any sports your body may be well suited for? I imagine long distance running or maybe even freediving?
Also if you had the opportunity to sit in a cave with a candle. And just a bright candle. Inside the cave time stops but all you have is the candle and yourself and the cave, you wouldn’t age and time outside the cave would pause for you. What would you meditate on? What would you look for within your own mind for stood aside from the world?
My 3mo old has pectus excavatum. How does it impact your life? Anything we need to watch out for?
Did you try eating high-fat content milkshakes to supplement your diet?
I feel for you. Dysautonomia makes it difficult for me to eat as well. A lot of people don’t consider how much it affects appetite and how much nausea it can cause.
Not a question just saying that I relate so very much, I’m 63 inches tall, and until I got pregnant my average weight sat between 75/85. Still now the most Ive ever weighed post pregnancy was 108. (way better but still) am chasing a pots diagnosis down myself. My drs don’t know what to do either but, my sister/mother are just as small too. You’re deffo not alone. 💜
Edit: none of us have a diagnosis related to our weight either. Have literally just heard “genetically small with too high of a metabolism” which is.. helpful. 🫠
My youngest daughter is like you at approximately your age. We have been to many doctors and they are shaking heads: everything is just fine with her except the weight. It’s just the way it is.
You’re 5’5” and you weigh 84 pounds? I’m 5’8” and weigh 180 although I am a male. Maybe you’re just super skinny?
You are not a human miracle. Saying you eat three meals a day insinuating you eat enough but can’t put on weight is clearly not correct.
You are unique in that you don’t appear to have an appetite like most people.
Hi, first of all, I’m sorry about your conditions that make it difficult to stay active. I’m in a similar situation- POTS and an esophagus disorder. I have been hospitalized for deficiencies, but also never for weight (I am around yours). Do you think about your expected lifespan? People tend to lose weight as they get older due to slowing of the digestive system. Personally, I’m not saving for retirement
i have a bmi of 32.9 so im in opposite direction and trying to knock it down. was 33.7
Fellow zebra and I’m curious, have you ever been assessed for gastroparesis?
Good luck with everything. I’m pretty thin myself, 17.3 BMI. Most days I eat quite a bit. Sometimes I stuff myself with sweets, but still don’t gain much. It’s tough sometimes but keep your head up!
Tested for graves?
Posted for you and as an FYI for any other zebras/potsies who pop in: are you around people who know about vascular compressions?
It’s often a comorbidity of EDS that medical folk can miss unless they know about it and specifically refer you to vascular imaging (normal imaging may not pick it up, they need to do imaging for your blood flow in different positions and doing different things. Don’t let them only do it lying down when gravity hasn’t entered the chat! Rookie imaging error).
Two are SMA and MALS which are arteries in the duodenum and abdomen impacting how your body takes nutrition from food no matter how much you eat. Took them years of telling me I had nothing wrong to find mine. Something to think about, good luck!
hi, have you heard of marfan syndrome? the sunken in chest, the low weight and also the hEDs could all be things, along with very low weight as weight tends to go to the gut if at all, along with skinny legs, fingers, and arms.
My 4 month old was just diagnosed with pectus excavatum. Could you talk about how this has impacted you as you’ve aged? Especially pre vs. post puberty.