Crys

To further illustrate what I mean about the ignorance over here, I tried seeing a cardiologist about 6 months ago and as soon as I walked into his clinic and said my POTS was worsening, perhaps due to breastfeeding, he said “you have anxiety. I can’t help you.” He sent me away. I paid for a full consultation just to hear that one ridiculous sentence lol.

I live in Lebanon, in the Middle East. Generally we have excellent doctors and a great health care system, but we have a tiny population of like… 4 million people. So there just isn’t much awareness about rarer diseases, particularly chronic ones with unclear treatment options and unknown etiology.

I have struggled so much with this over the years. I have never tried going to the ER for POTS symptoms, maybe because I was already diagnosed as a teen so I kind of already know what is going on. Usually when I bring up my PoTS I have my parents and husband being “supportive” but you can tell that on some level, they’re not really sure how bad it actually is. Like maybe I’m making a bigger deal out of it than it needs to be. My husband, who I’ve been married to for over 10 years, actually had the gall to ask me a few weeks ago: this POTS thing, are you like, sure you have it? Do you think you have it because you read about it or do you know you actually have it? I had to remind him that an actual doctor did actual tests on me and gave me actual beta blockers (which he knows, but it seems he conveniently forgot). What is driving me nuts right now though is that I am pregnant with my second child and I’m in the first trimester and my symptoms are rendering me completely unable to function. And this is where the “support” really starts to slip. People are inconvenienced because no one wants to help me take care of my toddler, they’re busy with their own stuff, and therefore it becomes inconvenient to believe I’m genuinely in bad shape. I tried explaining to my family that I’m having a terrible time with this pregnancy and one aunt said “no, this is nothing”, as if I just need to toughen it out, and the other told me that when she gets depressed, she also has a hard time getting out of bed (insinuating that it’s all in my head). The only reason I had to mention it to my aunts at all (which I would generally rather avoid since they’re quite judgmental), is because I need my mom’s help since my husband is always at work, and they keep badgering her about coddling me or enabling me when I should be able to take care of my life by myself like any other adult. I wish I could just stop caring what they think. What is so aggravating is that I physically need help so I’m literally dependent on people believing me. I hate this.

It’s so weird, I also hardly drink at all. I have always hardly drank water. My mom as well. In fact I notice I have a few maternal cousins who say the same thing. One of them has severe daily migraines. The thing is, although drinking does help me to some extent, it kind of plateaus at some point. So I can relate to what others are saying here about our bodies not even retaining much of the fluid. But I have never tried taking IVs unless it was in the context of me being in the hospital for some unrelated reason, so I can’t tell if it helped my POTS at the time. My problem is that no doctors in the country I live in seem to even want to have a discussion about POTS. It’s just brushed aside. The doctor who diagnosed me as a teen left the country and it looks like that was my only shot lol.

I get this quite often. I especially get it if I’ve had caffeine, my blood sugar is getting a bit low, or a couple hours after I’ve had a high-carb meal.