Is pursuing a diagnosis worth it?
Hi y’all, I want to preface this with I’m not sure if I’m breaking rule 2 of this subreddit but I’m feeling conflicted and was hoping for some insight/advice.
So I (21F), have not pursued an official diagnosis. In January I had a really rough two weeks. I could barely get out of bed and felt like I was on the verge of passing out multiple times a day. I have experienced symptoms that, to me, appear to be similar to those from POTS, for a while now and have only ever truly lost consciousness once. That week was my breaking point and I decided to finally talk to a doctor and see what they say. So that same month I saw an FNP nearby and specifically brought up my tachycardia as my most concerning symptom and mentioned (what I now know is) pre-syncope. That day she ordered a 7 day heart monitor, a blood test, and a prescription for propranolol to take “as needed” or when my tachycardia is extra concerning. Blood test came back normal and she said my heart monitor showed tachycardia when I marked symptoms but no irregularities but if I “still didn’t feel good” to go see a cardiologist. My psychiatrist, who diagnosed me this summer with ADHD, is still pretty concerned with my heart rate (finding an ADHD med that works has been a big struggle), and she suggested/agreed that it may be POTS or some kind of dysautonomia.
Where my internal conflict comes in: I don’t think I want to get diagnosed. I’ve read a lot about different lifestyle changes that may help people and experimented on my own and think I’ve kind of found what works for me most days. I think the symptoms I experience (the pre-syncope, tachycardia, etc.) would be on the milder side, and I’ve read that there’s not really much you can do aside from electrolytes, increase salt intake, light exercise, etc.
On the other side, I’ve been feeling some imposter syndrome because I don’t know how to explain to others whats wrong, what it feels like, and self diagnosing is wrong. If I try to explain how I feel, people just try to tell me I have low iron or haven’t had enough water and I just feel frustrated. Part of me is scared to pursue a diagnosis and potentially have to officially leave a huge part of my identity behind. I was a college lacrosse player, avid gym-goer, runner, and it’s hard for me to draw a line and “say goodbye” to that part of my life. Ive always been the person to play through injuries and ignore pain, but this is at the point that I can’t ignore it anymore. I already know I can’t run anymore (I’ve tried, jogging even 50 ft feels I just ran 10 rounds of full-field gassers), and I can barely make it up 3 flights of stairs to my apartment without my HR hitting at least 160bpm.
All of that long-winded self pity to say, did getting an official diagnosis significantly help you? Are there aspects to getting diagnosed and treatment that are worth the headache (and financial burden) of advocating for yourself and fighting for answers from doctors? Would it be worth it just to rid myself of feeling like an imposter? Or is it probably okay if I leave it be (unless it gets worse or more serious)?