What if I could ask you only one thing?

I’m a good person, and I work hard to be caring and compassionate. Every once in awhile, though, advocating for myself takes on a different form.

Once, in 2010, I had been out of the house for a doctor’s appointment, and my mom had taken me to a restaurant to meet some family friends. I headed into the restroom, where there was a woman replacing some of the paper towel rolls. I headed into the handicap stall, because I had incisions all over my leg, and the handicap stalls have taller toilets (ergo, less pulling on already tender staples). I also had a WoundVac attached to my lower leg, so I needed to be able to manage that. While I was in the bathroom, an older woman entered the restroom and, upon seeing the handicapped stall occupied, made a comment about how restrooms really needed more than one of those. The employee made a comment along the lines of, “Well, we wouldn’t if people who didn’t need them stopped being so lazy.” In all my Prednisone energy, I left the stall and pulled up my pant leg so that both the employee and the elderly woman could see my WoundVac (the fasciotomy was covered by it), washed my hands, and left. I’m sure they muttered something, but I don’t remember what it was. 

People can be so critical of what they don’t understand, and that can be hard for others to explain things, when they themselves are suddenly thrust into a situation that they never imagined. I work in a field where I am constantly interacting with people, and I have learned how to field a lot of different questions.

— Category 1: “How are you feeling?” For this question, we need a flowchart. IF the request has been made sincerely and not as a result of good manners, be honest, but filter. It also helps to give the person something they can do to help (something small, along the lines of “I’m trying to brainstorm new smoothie recipes”); it makes the people who are sincerely asking (usually family or close friends) feel less sad and more like they can be involved. IF the person is asking as a courtesy, give them the generic, “I’m doing okay. My doctors are taking good care of me!”. I’ve learned that those people are not the ones to vent to, otherwise you’ll get stories of their mother’s neighbor’s cousin who has eczema on their right knee.

— Category 2: “Aren’t you hot? Why do you wear jeans or slacks all of the time?” I choose to cover my scars, because they can be a lot for people to take in. Others’ rebuttal usually is similar to, “I had mole biopsied on my back, but I still wear a bathing suit.” When I hear this, I always bristle and end the conversation quickly with a “I’ll think about it”, otherwise I’ll say too much.

— Category 3: “It looks like your moon face might be getting worse.” Yes, one of my extended family members actually said that to me. She was trying to be helpful and convey concern, and it came out more harsh than she intended. Somehow, between the surgeries, and the doctor’s appointments, and the medications, my personal life became everyone else’s business. I’m all for being healthy, and have been focusing hard on getting my body back in the past months, but 4 years of Prednisone takes its toll. When people make comments about my weight or my physical appearance, it hurts. It may be a side effect of my illness, medications, and the mental strain I’m under, but it’s not everyone’s business. These kinds of questions are completely out of line, and I always terminate the conversation with a “I’m managing everything to the best of my ability.” Luckily, I don’t have stretch marks from the weight anywhere except my inner thighs (they’re actually on the scars), so I don’t have to field questions about how I got those. 

In general, I’ve learned that the best way to handle intrusive questions is education and advocacy. Educate those around you about your illness and what your daily life is like, and advocate for yourself when misconceptions arise. Your family and friends want to help, they just need to know how to bring it up.

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Why I don’t like “The Spoon Theory”.

“The Spoon Theory” is a popular article among those living with a chronic illness; however, I find it generally offensive. Yes, it may help to explain to those unfamiliar with my daily life the amount of time I have to spend daily managing my illness, but it comes across as attention-seeking and dramatic. My life has been full of more than enough drama due to Behcet’s for one lifetime, and I don’t care to view every task, no matter how mundane or meaningful, through the eyes of Behcet’s,

Behcet’s isn’t my entire life, it is simply one facet of my life. Spend a day in my shoes, and you will quickly realize that I spend my days juggling a thousand other responsibilities. Yes, I have to follow doctor’s orders, take my meds, manage my primary and secondary symptoms, and deal with chronic pain, but I cannot allow that to control my life; I choose to be in charge of my illness, instead of letting it dictate my life. I don’t want to wake up and put limits on my day – I want to see how much I can squeeze into it. I have spent months at a time on bedrest; I have been hospitalized for weeks at a time; I’m constantly changing meds and adjusting to new side effects; I know what it’s like to have your life stopped by an illness. I have tasted that, and I cherish each day that I do not have to endure those conditions.

 I go about my life, and Behcet’s conforms to my lifestyle. Yes, I make accommodations, but I do everything I can to not allow one facet of my life to affect the others. Obviously, if I’m recovering from surgery, I will have limitations. The first month on an immunosuppressant requires me to limit my activity. But the rest of the time, I pack up my meds and go about my business. Flares or no flares, I have things to do. People rise to the expectations that you set for them – I choose to keep expectations for my life high. 

The Ugly Days.

I hate them. They’re the days you just really feel like shit. The days that the weight of the world is on your shoulders, and you can’t help but take it out on unsuspecting loved ones who cannot possibly understand, because you have done everything you can to protect them from having the information they need in order to understand.

They were daily while I was on bedrest; I expected too much of myself, my body, and those around me, and everyone suffered because of it. They became less frequent as time progressed, but they returned this spring with a vengeance when my body refused to cooperate. They are the days that I have fought off for the entire fall; the days that I’ve been in counseling to combat; the days that I have spent countless hours fighting against with positive thinking, deep breathing, and every other possible path to acceptance.

But they still happen. No matter how much work I put in, no matter how much support I have, no matter how far I have come. I still have the ugly days. It’s exhausting.

I don’t want to feel this way – I want to be the picture of a 20-something who can juggle a chronic illness and a full-time job. I want to be the adult woman who can control her emotions and handle what life throws at her.

My theory currently is that I have found a psychological homeostasis with the day-to-day dealings, but when an additional stress is piled on top, I buckle. It’s less frequent than before, but it still happens. As much as I don’t want it to, as much as I try to prevent it, I buckle. 

This one will pass. Until then, I’m trying to minimize the damage and implement the techniques I’ve been practicing for such a time as this. 

The First Days

I will never forget the day I was diagnosed with Behcet’s – February 19th, 2009. I had a particularly bad case of genital ulcers, and my OBGYN was not able to work me in. I had been seeing the same OBGYN for about 7 years, for treatment for the ulcers and some pretty nasty cramping and cycle issues. We had a love / hate relationship – when I had first visited him at the age of 14 for genital ulcers, he had insisted I was just lying about being sexually active and contracting Herpes. He told me that it may be a different condition, but he had only seen one other patient with the condition while he was practicing medicine, so I just needed to be honest.

Over the years, I had visited him several other times for cramping, heavy bleeding, and irregular (and generally awful) cycles. He had seen me only a few months before when I was practically bedridden from cramping and diagnosed me with an arcuate uterus, and we had been on better terms since then. But, since I wasn’t particularly attached to him and really wanted answers for the recurring ulcers, I made a call that changed my life. At the urging of a friend, I called another OBGYN, one who specialized in high-risk obstetrics. This doctor was able to see me within hours, so I readily took the appointment.

Going into the office, I filled out pages of paperwork with my various medical issues, and waited. I was only about 2 months post-op from my first set of clots, so I was still learning how to navigate giving my medical history to the nurse. When my doctor entered the room, I told him about my genital ulcers that had been plaguing me for my entire teenage years, and he began to ask questions. I told him about a retinal detachment that happened my senior year of high school; a seemingly random arterial clot; my sordid history with my menstrual cycles. He continued to ask questions, and then patted me on the shoulder and told me he would be right back. He returned with a single sheet of paper, and gently told me that he thought I had a disease called Behcet’s. He wanted to do some bloodwork and get me in to see a couple of other doctors who could confirm or reject the diagnosis. He handed me the single piece of paper – the only page in any of his med school textbooks that gave information on this mysterious illness, and cautioned me against using internet message boards when I did my own research. He also gave me a prescription for Lidocaine ointment, which was the first time that a doctor had ever validated the physical pain that went along with my ulcers. Sidenote: For anyone who has not discovered this gem, Lidocaine ointment is the only thing I have ever found to help with the pain of the ulcers. No more squirt bottles or immediate baths after urination, just use a little of the Lidocaine and it’s almost as good as new. For someone whose ulcers tend to be more like gaping, weeping craters, this changed my life!

I left that doctor’s office feeling happy because someone had finally given me an answer. Someone had finally said that things like this didn’t happen to everyone. Someone had finally connected all of the “random” medical issues I’ve had and put a label on it. I assumed I would get some bloodwork back, see the other doctors, and pop a pill each morning, and then get my life back.

In the parking garage, I read the page that talked about Behcet’s. It seemed to describe me, and it didn’t seem to be very horrible. I remember calling a dear friend and saying the now-ominous sentence, “I mean, it can’t be that bad – there’s only one page in a medical textbook about it.” I called my parents and told them. They reacted differently – they became very worried and had a thousand questions whose answers were no where on my sheet of paper.

In the next few days, I got calls from the doctor’s offices that I had been referred to, and oddly enough, both receptionists said something along the lines of, “Dr. X is pretty booked, but (he) has moved some things around and can see you next week.” I didn’t really understand the urgency, but I happily agreed to the special treatment. I was used to doctors telling me that my symptoms were odd, but nothing to worry about.

As I waited for the appointments, I began to do some research of my own online. I started to realize that I was in for a much bigger medical experience than I had previously thought. I was suddenly thrust into two doctors appointments. One with a dermatologist, who was wonderful and helped me navigate many of the obstacles that came up in the first two years of treatment, and the other with a rheumatologist, who proved to be my first experience with a doctor who chose a treatment course without consulting my individual case or symptoms.

I will forever be grateful to (and still see regularly), my new OBGYN who, all dramatics aside, saved my life. With the progression my case has taken, I firmly believe that had he not remembered that one page in one of his textbooks, I would not have made it to today, or at the very least, I would not have made it to today in one piece. Doctors who genuinely care and take the time to work with patients are rare, and I am so blessed to know some!