They value me more when I am literally diminished or why I’m not talking about my unexplained weight loss

t I’ve been keeping something from you and most people. I’m struggling with ongoing symptoms related to a potential GI disorder. That’s not the piece I held back – I’ve written about those experiences.

The part I haven’t mentioned is that I’ve lost 25 pounds since the spring.

<waits to see what you say> <– this is where people lean into comments like “that’s great” or “I wish I could lose weight” or “you look great” or some such reflection of diet culture and body negativity themes we’ve been stewing in since our uterine days.

I didn’t set out to lose the weight. It isn’t good and I don’t look great. Not so much because of the weight but because of the underlying reasons – mostly, that I’m not eating. About 50% of less of what I used to eat. Last night, Laura made hotdogs and tater tots. I ate half a hot dog, one third of a bun, and maybe six tots or so. That’s it. For the day.

It is medical. In August,  I had 19 medical appointments as part of my search for answers. Most of me is pretty healthy, even the fat parts. The autoimmune element is very much on the table, but it may be my upper GI including how I swallow.

My gastroenterologist has moved from the general endoscopy/colonoscopy (both great) to less familiar tests. Next week, I’m having an esophagography also known as a barium swallow.

In the spring, I went to see a new ENT to address some allergy issues and through her discovered that I have a “naturally narrow throat” – it isn’t scarred from GERD or anything like that. My thyroid and tonsils are the typical size. Sometimes I have problems swallowing or feel like I can’t remember how to do it, a disconcerting situation.

Apparently, these things are connected. I participated in a sleep study last week – right at home – to get a better sense of how the throat impacts my breathing. I may end up with a CPAP machine, but that’s not going to help the other job of my throat – eating.

After the barium swallow, I may have an esophageal manometry that involves tubes and local anesthetic and looking at my esophagus. And then? They might stretch my throat using an array of tools.

Never in a million years did I imagine having my throat stretched. Or anyone having their throat stretched. It sounds barbaric, right?

I’m exhausted most of the time. My clothing droops on me so that’s uncomfortable. I have no energy, no stamina. I had to content with poison ivy, a cat bite, and a kidney issue in the midst of all of this. Even my face masks fit differently.

I avoid people because I don’t want to hear the body negative comments about weight, the unasked for advice about eating – yes I know smaller bites and more frequent meals are useful, and the constant ableist assumptions about GI issues – as soon as I say autoimmune, they say “Oh Crohns” or “IBS” before I have a chance to explain. I’m so tired of people asking me about West Nile Virus and Lyme Disease. Or Adrenal Fatigue. It might be true, it might not.

I know some is well intended, but it rarely comes with all the necessary caveats like ASKING IF I WANT ADVICE. Perhaps worst of all is they do this publicly so other people who might be struggling with their own medical issues witness the ableist disregard for me. That’s not okay, no matter how much you love me.  At least ask me privately if I want you to share that on my thread. Don’t assume everyone needs to know and if you do, it isn’t my responsibility to provide that platform.

Weight loss is tied to traumatic experiences for me, things I’m not going to dive into right now. I grew up immersed in food insecurity and surrounded by multiple men who felt obliged to constantly comment on weight of all of the women in our family. I’ve moved through the world as a fat woman for years and that has left some scars, albeit invisible.

It is not fun to realize most of your clothing doesn’t fit, especially the shorts and pants. I have no idea if I’ll regain the weight, lose more weight, or what so I can’t justify purchasing new clothes. But ill-fitted clothes are uncomfortable. It isn’t fun when someone admonishes you for sharing your health concerns because they aren’t as serious as their own concerns. There’s nothing fun about feeling anxious about losing weight.

Perhaps worst of all is the reality that there are people who think I am better off losing weight even if it means all of these appointments, procedures, co-pays, and dead ends. They value me more when I am literally diminished.

My anxiety is a little higher because of the increasing COVID-19 infection numbers. The last place I want to be is in a medical testing office or a doctor’s suite, much less Urgent Care.

I keep repeating “Hopefully, we’ll get some answers” even as I steel myself for some unforeseen bad news. I take comfort knowing so much of me IS healthy and strong – al of my organs, my bloodwork, no sign of diabetes, my ovaries “still robust”, my esophagus (so far) and colon organs are free of polyps or damage, my heart is strong, my blood pressure great, my rhinitis and asthma under control, even my skin got checked and good marks.

Good news, all of it, but no clues to why I’m having these other symptoms. The prospect of a rare autoimmune diagnosis on top of being fat and mentally ill is daunting, but it is better than just not knowing.

Writing this post reclaims the space no longer occupied by 25 pounds of Sue.

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  • I’m sorry about these problems. I hope the doctors you’re consulting can help you find the reason for the mysterious weight loss and figure out an appropriate heathcare regimen. Best wishes!

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