Author Preface: I will describe my personal trauma and autoimmune disease journey in the best chronological order as possible. However, if you personally have or know anyone who has suffered with autoimmune diseases then you know that brain fog is a very real thing, so please forgive me if my recollection is not entirely accurate.
Trigger Warning: This article contains explicit language, mention of addiction, and sensitive descriptions of various illnesses and medications. It is a first-person account from a woman who chooses to remain anonymous. This is her story, and not a substitute for medical or psychiatric advice.
Its January 2019 and I’m two months into a new relationship with a guy I can see myself with forever. I’m finally happy after years of picking the biggest red flags imaginable. While trying to enjoy all of the exciting adventures of a new relationship, I am simultaneously trying to stifle my inner anxiety over the closing of a house that I have been struggling with for months. A few months prior I had finally found a house in Miami that fit my needs. It was within budget, allowed my large dog, low(ish) HOA fees, great location, close to the highways, safe neighborhood, and a fenced in patio to name a few. I NEEDED this house because if you know Miami then you know the real estate market is brutal. The house was being sold as-is via Trust by the sole heir to two deceased parents and the original closing date had been early December. However, right when I was ready to send over the check the title attorney calls to tell me that the previous owners had not one, not two, but FIVE liens on the property and it wasn’t likely they would be able to work through the mess in time to close. I was devastated but determined to wait it out since I had no other options. Thankfully my apartment complex was allowing me to stay month-to-month until everything was resolved.
Finally, its January 29th, we are ready to close, and I hand over my check in exchange for the keys. Little did I know what I was getting myself into. If you’ve ever suffered from extreme stress and anxiety, then you know it can feel like your body is in fight or flight mode at all times. It’s like this heightened state of extreme panic/alertness where you can’t get a full breath until the stress is eliminated and when it is you feel an almost flood of relief come over you. That’s how I felt on that day.
Finally, I had caught a break. But a funny thing happens in your body when you struggle with anxiety. That buildup of stress was too much for my body to handle. The next day I noticed a couple of little bumps down in my genital area. I thought it was odd since I haven’t had razer burn or ingrown hairs in years since I had laser hair removal (highly recommend that!) but I didn’t think too much of it. Saturday was moving day and I was excited for my boyfriend to get off shift and help me load up his truck and move forward into my new life. Then Friday came. I had to work and felt very uncomfortable siting down all day in tight pants. Later that night I grabbed a mirror and saw what were multiple red blistery bumps all around the labia minor area. I was getting worried so off to Google and WebMD I went. My boyfriend was on shift, so I was texting him telling him what was going on. Neither of us had any answers seeing as we’d both had negative STD tests, but something was definitely not right. I decided it had to be some unusual yeast infection symptom since I had been prone to getting those in the past. I went to sleep with a newfound uneasiness in my heart.
The following day was moving day. I woke up in excruciating pain. The bumps turned to blisters which were opening and causing immense discomfort with every movement. Peeing hurt. Wiping hurt. Everything hurt. It had to be herpes but HOW? Of course, it was Saturday, and my primary care physician was not open until Monday, so I sucked it up and we moved my things into my new home. You’d think it would have been a joyous occasion, one with celebratory wine and an epic lovemaking session at the end, but no sex was happening, that was for sure. I felt bad and guilty like I must have this horrible disease and probably gave it to my poor boyfriend who probably thinks I’m disgusting and now I don’t want him to even touch me. I just didn’t know what to do.
Finally, Monday came, and the pain was unbearable. Unfortunately, my PCP (who I love) is always booked up months in advance and without any other options, I went to the Urgent Care. BIGGEST MISTAKE. There was absolutely zero privacy there. You walk in and are forced to tell some random male doctor whom you’ve never met about your lovely new mystery vaginal disease. They sit you on a gurney until a female nurse comes by to take notes and look at you with a grossed-out face like you’re a slut and deserve to walk around with a huge scarlet letter for the rest of your life.
Finally, a female doctor on staff took me into another room for a pelvic exam. Feet up on the stir-ups. Show ‘em the goods. I was mortified. She immediately said it was herpes and took a painful swab to be sent off for testing at a lab. In the meantime, she sent me home with Valacyclovir (Valtrex) and ordered me to go for a new round of full STD blood tests. I left feeling like my life was over. I texted my boyfriend who was again at work saying, “I’m sorry I just likely ruined your life as well. I hope you want to marry me now since no one else is going to want to be with us knowing that we are diseased”. Dramatic maybe, but that’s how I felt.
A few days later and still no call regarding the lab results on the swab I gave. Three on-call doctors later and the response I finally got was “we’re sorry we lost your results”. Still gotta pay your ginormous bill though. Fast-forward to a couple weeks later and my blood tests come back. ALL NEGATIVE. What the actual fuck?!
A month later my boyfriend is on a vacation with friends, and I noticed another bump appear. I freaked out and took the second bottle of Valtrex I had saved. I called my PCP once again, crying hysterically on the phone. The only doctor who could see me was a male, three days later. I took the appointment but by the time I got there the bump was healed. I felt like a fool lying there in the stirrups trying to convince them that something was wrong with me while they’re all looking at me like I’m crazy.
At some point in February, I remember waking up next to my boyfriend with what I refer to as sausage fingers. I’d had them before when living up north in Maine. It usually occurs when the seasons change, the humidity decreases and the cold starts to set in. There’s not really anything you can do about it. It’s just ugly, uncomfortable, you can’t take rings on or off, and eventually it goes away. Only this time it didn’t go away. Over the next few months, it expanded over my entire body. My arms would go numb which made turning the wheel while driving extremely difficult. Thank god I no longer had a manual or I wouldn’t have been able to drive at all.
I had pain in my upper back area that I can’t really explain other than just excruciating tightness without any apparent cause. Getting out of bed in the morning was the worst because the bottoms of my feet would be so sore, almost like bruised bones. I’d take one step and feel like I was going to fall over. Once I’d get going in the morning, take a hot shower, and loosen up it was at least livable but I just felt so alone.
Here I have this boyfriend who at this point I’m in love with, but I can tell he’s getting annoyed with all of my mystery ailments and can’t possibly understand since he’s never experienced anything like it himself. I felt guilty even though I knew it wasn’t my fault. Try making love to someone when you’re one top and your wrists give out and you have to switch positions. Embarrassing as fuck. And the worse part was that while I desperately needed him to just hold me and tell me it was going to be okay, that we were going to figure it out together, he instead turned deeper into alcoholism. It was a problem he’d had since before I’d know him but yet again, I’d overlooked all the red flags. In my defense, I think it’s very easy to overlook things in the beginning of a relationship. Especially when you’re a hopeless romantic and always want to believe the best in the people you care about.
All while these things are happening, this new house I was so excited about buying is proving to be the epitome of renovation nightmare. The first issue being the roof that needed to be fully redone despite the lying home inspector who told me it had a good 5 years left of life. It was one thing after another that first year trying to make the house merely livable let alone enjoyable. I was doing as much work as I could by myself to save money while being in pain the whole time as my body became more and more immobile.
Flashback to diagnosis #1
It must have been around May when I suddenly had a flashback to 20 years prior when I was 12 years old, experiencing typical teenage acne and taking a medicine called Minocycline. I had been on it for about two years with amazing results. It was a beautiful crisp, cool fall day when I was out on a walk and noticed two of my fingers swell up. That was the start of everything.
I had perfect, clear skin. I absolutely loved the Minocycline. Until I couldn’t move my body anymore. Soon thereafter, I’d be skipping days of school because my body wouldn’t bend. I remember having to slide off of my bed keeping my body as stiff as possible just to make it to the bathroom. No one knew what was wrong with me. That’s the worst part of these diseases, they’re silent. No one believes there’s anything wrong with you unless they’ve experienced it before.
Eventually my parents found a young rheumatologist who did some research and discovered a few other rare cases in the country where teenagers on this same drug experienced similar issues. I was told to stop taking it immediately and take high doses of ibuprofen several times a day until it went away. I was devastated. What 12-year-old wants to go back to having a pizza face? But I did what I was told and eventually the pain disappeared. The diagnosis at the time was Subacute Cutaneous Lupus. Apparently, a drug-induced form of lupus that is not deadly just debilitating. Frankly, I’m not sure which is worse.
At some point in my 20’s I recall visiting another rheumatologist in Maine because of my severe circulation issues. When I’m cold (which is nearly all of the time), my fingers, toes, nose, and ears burn and turn a fiery red or blue/purple. This doctor did more blood tests, confirmed the Subacute cutaneous lupus diagnosis, suggested it’s also likely something called Reynaud’s Disease, but said there was nothing I could do unless I wanted to try a drug called Hydroxychloroquine (Plaquenil) which carries a primary side effect of blindness. No thanks.
A few years later I was beyond miserable with life. I had a nice house, nice car, beautiful dog, and lived near my family. However, I was working in a career I hated that sucked every ounce of joy from my life to the point where I had to convince myself to get out of bed every morning just to put food on the table. I job searched for a few years unsuccessfully until I ultimately decided it was better to give it all up and start over fresh somewhere new. Somewhere warm. Cue Miami.
Remembering what had happened to me 20 years prior, I quickly found a reputable rheumatologist in Miami and made the first appointment I could get. I started off by telling him how this whole thing started back in January with the unexplained genital ulcers. I was of course embarrassed, him being another male doctor, and worse so when he scoffed if off saying that autoimmune issues don’t cause symptoms like that. I then told him about what happened to me when I was 12 and thankfully, he had heard of that condition before. He ran a million new blood tests and when the results came in, he told me that I have positive factors of Rheumatoid Arthritis, Lupus, and one I hadn’t heard of called Sjogren’s Disease. Given my present symptoms of swelling he said it was most likely Sjogren’s and he recommended I take the Plaquenil. This time I decided to give it a try since I had no other options and could not continue to live disabled.
With Sjogren’s, the body’s immune system attacks its own healthy cells that produce saliva and tears. Oh, and vaginal discharge and dryness which an old school male doctor is not going to tell you about. Yet another source of anxiety into my slowly dying relationship.
While I’m dealing with my own mystery ailments, my boyfriend has now convinced himself that I am not attracted to him because I don’t produce enough discharge anymore which causes me additional anxiety constantly trying to tell him that is not true while he drinks away his despair and becomes increasingly more angry towards me. I found myself in a downward spiral of trying to save myself while also trying to save someone who apparently didn’t want to be saved. I felt like I was constantly walking on eggshells. Nothing I did or said could improve the situation. He even went so far during one drunken episode of accusing me of keeping my condition from him when we met. As if I purposely made him believe he was getting into a relationship with a healthy person and had tricked him into falling for some sick, dying person who he would have to take care of. While this may sound ridiculous, I know it stems from his childhood trauma of having to take care of his own alcoholic and drug addicted family members, so while I was beyond hurt that he would accuse me of this, I still understood where he was coming up with these accusations. I could write a whole other book on the alcohol abuse that ultimately destroyed that relationship but that’s not the point of this story. Sadly, to this day I still love him immensely (the sober version), but you can’t help someone who doesn’t want to be helped. Don’t ever try to convince yourself otherwise.
Adding to my stress early that spring was that the only employee I worked with who was of any real value to my “team” at work gave his notice. For months I felt like I was the only person carrying the department while my manager promised month after month to keep pushing through because the promotion and raise I so desperately needed and deserved was coming. The stress was unbearable. I went through boxes of tissues at my desk, passing my flooded eyes off as allergies to nosey passersby. The promotion finally came months later but at that point the damage was done. I was mentally, physically, and financially drained.
PCP Visit 2019
At my annual PCP visit that fall of 2019, I explained all of these ongoing issues. I used to be the epitome of health. Every year I’d have perfect blood tests, ideal weight and physique, and was generally fairly happy and successful in life. This year my health was thrown for a loop. I used to be a competitive bodybuilder, so I was at the gym every day and had a lean, muscular physique I was very confident in. Now I was staring at a girl who had lost 20 pounds without trying simply because she couldn’t lift weights like she used to. The anxietyand depression over all my health issues must have sent my metabolism into overdrive. My doctor recommended I schedule an appointment with a gynecologist who was more specialized in the sexual issues I was having.
I chose a gynecologist near my house out of convenience since driving more than 5 miles in Miami takes about 3 days. Big mistake. I explained my dryness issues and how I had been diagnosed with Sjogren’s and they looked at me like they had no idea what I was talking about. The first doctor pawned me off on a Nurse Practitioner who apparently had a strong interest in sexual dysfunctions and thought I was some sort of exciting science experiment. First, she recommended I stop taking birth control pills which I had been on successfully for 20 years since *maybe* they were causing the dryness. She then decided I must have some pre-menopausal symptoms (at 33!) and prescribed me these outrageously expensive vaginal suppositories that are supposed to make you extra lubricated down there. Well let me tell you, if you aren’t having sex before those then you sure are hell aren’t having sex after using them! They ooze out like a gooey messy wax and taste like that bitter spray you use to make your dog not chew on furniture. Talk about not attractive. When I went back a second time to tell them it wasn’t helping, they said they had no other ideas for me and sent me off on my merry way with more medical bills to pay.
Sidenote: if you have a patient who has been dealing with multiple anxiety inducing issues for years now maybe an anti-anxiety medication might be something to discuss!
Flash forward to a couple of months later and my increasingly drunk and angry boyfriend decides to pick a random, untrue thing to accuse me of which sends me into hysterics and my body returns to fight or flight as I stupidly beg a guy who is treating me like shit not to break up with me over something I never did. The next day I get another vaginal ulcer. I take Valtrex again and it goes away a few days later. Let met emphasize this: STRESS KILLS. You can do all the yoga, meditate, swallow CDB, spray yourself with stress-relief perfumes, drink all the calming teas in the world, but if you don’t eliminate the source of your stress you will die of it. That I am sure.
Later that December my right wrist was swelling up badly, so I go back to my rheumatologist. The Plaquenil did wonders for my body overall but my wrist is still preventing me from doing basic daily activities. He gave me a cortisone shot as a temporary relief but told me to reduce the Plaquenil to one a day rather than the 1-2-1 plan I had been on since the dosage is based on your weight and I had lost too much over the past year. He did an ultrasound of my wrist which showed three separate ganglion cysts as well as an MRI which showed a shrinking of the space in the bones in my wrist but no breaks or fractures like I had suspected.
Over the next couple of months, the pain subsided a bit likely due to the cortisone and I had been able to lift light weights in the gym which made me happy. However, shit finally hit the fan in early 2020 and I felt for my sanity, physical safety, and self-respect I had to end my year-and-a-half long relationship with not only the man I still loved, but my best friend.
Love wasn’t enough and a relationship only works if both parties are willing to work equally and share a mutual respect for each other. While beyond devastated, I had hoped that eliminating that stress would alleviate my symptoms, but it did not. Grief and devastation over having to walk away from someone I had mentally planned a life with only made my symptoms worse. I felt like I was locked in a cage full of boulders weighing me down, immobilizing me to life. Around the same time Coronavirus hit the States, lockdowns began. Now everyone’s stress was up, not just mine.
Fast-forward a few months and my wrist got so bad I could barely write, type, unlock doors, mop, open cans, or walk my dogs just to name a few. I felt helpless with no answers. While being broken up, my ex and I continued to be each other’s support during the lonely months of 2020. I was working from home and for the most part, he was the only person I had who would come over to talk, have dinner, help with my dogs, and just provide me with company in a lonely, uncertain existence. I prayed he would use this time to get help but to this day he has just thrown himself into his work as a means of avoiding dealing with his issues.
In August, he pulled further away, as was typical whenever I’d try to bring up getting help. Avoidance is always the easier way out. The sadness took over me again and I woke up one day with small bumps on my back. I thought it was maybe some sort of a fungus from the gym, but hydrocortisone cream did not help and the next day it got worse. It spread across my back, under my arms, over my chest, and began to burn. I did a Telehealth visit and sure enough it was Shingles. I am not remotely exaggerating when I say it was the worse pain of my life. Closely inching out Hemorrhoids which is of course another lovely reaction I often get when in high stress situations. I’ve never had a baby, but I am certain giving birth cannot be nearly as painful as Shingles. If you’ve ever had it then you know the only way to describe the pain is as if you are being burned alive. More Valtrex.
A coworker had told me about a nerve blocker called Gabapentin that helped with his shingles so I called the clinic back but the doctor on call wouldn’t give it to me, claiming that it was only prescribed once the shingles broke and were healing. Fuck them, I thought. I went to a Latin Pharmacy (thank god I live in Miami where that is a thing) and got them myself. They saved me immediately. I don’t think I would have survived that night without them. Always remember: if one doctor tells you no, you do not have to accept that as a final answer. You are the only person who knows what you are going through so you must be your number one advocate.
PCP October 2020 Appointment
Again, I tell my PCP my latest struggles of the past year. She suggests I try a new gynecologist. It seemed pointless to me since I wasn’t dating anyone anymore, but I kept the thought in the back of my head in case of future issues. Again, we did a full STD screening, and everything came back negative as expected. She suggested something I hadn’t heard of before called Becet’s Disease, but when I looked it up the symptoms didn’t seem to quite match what I was experiencing. It’s characterized by mouth and genital sores, inflamed eyes, and rashes. One out of 4 symptoms didn’t seem that plausible.
In November, my right wrist swelled three times the size with no apparent reason and my rheumatologist had to do two more cortisone shots and another MRI which showed increased joint deterioration, which led to him to the additional diagnosis of Rheumatoid Arthritis. He Suggested a drug called Methotrexate which I didn’t want to try because if you take it, aside from numerous side effects, it’s highly not recommended to get pregnant on it. If you do accidentally, then you have to have an abortion, or the baby can be born with serious health issues. I was celibate at the time, but that is some scary sounding shit, and at my age if I did happen to get pregnant I’d most likely want to keep it. I’m not getting any younger. However, I decided to give the medication a try simply because I was otherwise helpless.
Feeling very uneasy about this drug, I made an appointment with a reputable Orthopedic Surgeon who works with the University of Miami Athletes and The Miami Heat. I was positive there had to be something wrong with my bone or joint that needed to be reset or something. She viewed my MRI results and agreed that Methotrexate was my best option. Not to worry, she said, since the drug has been used for decades successfully AS A CANCER DRUG (insert eye roll). She also prescribed me a stiff wrist brace which I wear occasionally to keep my wrist from bending painfully at the gym as well as this liquid pain reliever called Pennsaid that you rub on twice a day.
I’m not convinced it actually does anything but I figure anything is worth a try. However, I won’t be going back to that doctor for two reasons. First, after telling her I am a seasoned weightlifter she told me I have to give it up completely and become a swimmer instead (I can barely doggy paddle) and second, she basically told me not to worry about the pregnancy issue because at my age it’s already too late to try to find someone at this point. FUCK HER, I thought. I left more depressed than ever.
At the end of November 2020, I started the Methotrexate. It was the worst drug I’ve ever taken in my life. It’s an odd drug because you only take it once per week and take a full week’s worth of pills at once. I’m not sure what the reasoning is, but two days after you take it you get extreme brain fog and exhaustion like you’ve never experienced. Here I am trying to work at a brokerage firm dealing with huge amounts of money all day and I have no fucking idea what I am doing. Someone calls and asks me a question and what they’re saying is going in one ear and out the other. It’s like there is this huge wall of fog that my brain can’t penetrate. I thought about quitting but I can’t because I clearly need the health insurance.
I considered going on a short term leave but how am I supposed to justify that when no one can SEE my disease?! So, I just cry throughout my day while trying to find a way out of my misery. Every week brought on a new side effect. One week, I would get little bumps all over my face like an allergic reaction. Thank god for Prednisone because that is the only drug on earth that has every helped me. Another week I got red patches all over my face, kind of like an embarrassed flush but no plausible reasoning for it. Another week my breast swelled with a painful red lump which yet another male doctor at the PCP office claimed was an infected duct and prescribed me an antibiotic. How the hell you get an infected duct when you’ve never breast fed, who knows. Of course, my Rheumatologist claimed yet again that it had nothing to do with my autoimmune diseases or the Methotrexate. Then my period came and after an entire year of no genital ulcers a lovely new one popped up. I always keep Valtrex on hand now, so I started a round of that, and it went away again. Fast forward another month of random skin issues, exhaustion, and brain fog and once again a couple of days before my period another bump appears. More Valtrex.
At the start of January one night, I felt numbness in my upper lip followed by swelling and redness the next day. By the third day it had turned into a huge painful ulcer. I’m not talking a little canker sore. I’m talking a huge sheet of pain covering my entire under lip. Eating, drinking, talking, everything hurt. Luckily, I had another follow-up with my rheumatologist that day where I told him I can’t live like this anymore and want to discontinue the Methotrexate. My wrist wasn’t getting worse, but it also wasn’t getting better, and the side effects were not worth it. The next logical step would have been to increase the dosage and that definitely was NOT happening. He agreed to stop taking it and go back to the higher Plaquenil dosage instead even though I was supposed to weigh more for it.
As I write this it is February 2021, my wrist isn’t THAT horrible, so I am hopeful that it is helping. However, I thought by stopping the Methotrexate I wouldn’t get the ulcers any longer and boy, was I was wrong. Two days before my next period another mouth ulcer began to appear, and I also noticed another vaginal ulcer. Luckily a couple of months back I had made an appointment with a new gynecologist that happened to be that very week. By some sheer miracle of the universe, I had the vaginal ulcer when I went in and she was able to do a swab. I sat there crying not understanding how I could possibly have herpes when I’d been so careful all my life. She tried to calm my nerves saying that 90% of people have it even if they don’t know it and that it’s not my fault. It could have been from sharing a drink or something. She said it looked herpetic, but that she would send it away and promised not to lose my sample!
February 2021 Diagnosis
A week later she calls and tells me that I most definitely 100% without any doubt DO NOT HAVE HERPES and that she believes I do in fact have Bechet’s Disease. She agrees that these outbreaks are likely driven by extreme anxiety and prescribed me low dose anxiety medication called Clonazepam, which I have been on for a couple of weeks now. It’s been a miracle. I no longer lie in bed at night stressing over whether my ex is fucking someone new while I lie there missing him. Crazy I know, but I worry about anything and everything. Instead, now I just peacefully fall asleep and wake up rested and in a good mood.
Now most of my anxiety stems from work. Normally halfway through my morning I can’t breathe because the calls, instant messages, and emails won’t stop coming in. I feel like I’m having an ongoing panic attackMonday through Friday. It’s been that way for years. It feels like I can’t ever get a full breath because something in my chest is tightening and stopping me from a full release. I know it’s my job causing the panic because I’m okay on the weekends. But now I honestly just don’t give a fuck. I’ll get to it when I get to it and if that’s not good enough for them, then they can hire someone else. I won’t be crying over it. I gotta get that dirt off my shoulder as Jay-Z would say.
The gynecologist also had me go back on the birth control because often times the hormonal changes during menstruation can cause additional stress on your body. The best thing about this doctor is that she is the first one who has said to me “don’t worry, I am going to research and find out what is really wrong with you. No more throwing Valtrex at you and leaving you without real answers”. Hallelujah!
Another sidenote: The Valtrex apparently doesn’t help the healing at all because what I have is not a virus so all this time my body has just been going through its own healing process. What a waste of money I have spent on prescription drugs in the past two years!
Apparently Bechet’s Disease is extremely rare in the United States and is prevalent in “Silk Road” populations which would make sense since I am of European descent. While the disease is not yet curable (and probably won’t ever be since it’s so rare, no big drug company is going to allocate any money toward researching it), I can happily say that it is not contagious so there is no risk of transmitting it to someone else. I know my journey is not done. I will probably experience new symptoms over time, but I finally feel after two (or 25) years that I know what is really wrong with me. The only “cure” seems to be to avoid all stress. I’m working on it.