Some days, I’m just done.

I don’t want my blog to become a place where I only whine about medical woes, but I also want it to be a very real place where I convey what living with a chronic illness looks like in a very raw way. So, here goes.

This winter has been an emotional one. I’ve accomplished many things professionally that I am very proud of and worked very hard to obtain. But I’ve also been battling more with my physical health than I am willing to admit. I attempt to do everything that I can to shield my loved ones from the repercussions of living with a chronic illness, because it only upsets them.

In the past three months, I have had the flu twice, and I’m currently experiencing a cold and a flare that I would rather not deal with. As someone who prides herself on being professional and compartmentalizing her life, I am struggling with the fact that I had to take today off work to try to get over the cold that I currently have and allow this flare to start subsiding. 

For the immediate future, I am upping my Prednisone (something that I loathe having to do) and attempting to de-stress and rest.


To *That* Girl

To the woman who has the option of either working full or part-time, or being a stay-at-home mom, and switches between the three at least yearly.

The the woman who has multiple healthy, typically developing children and mentions that “maybe you being infertile isn’t such a bad thing”.

To the woman who is married to someone who provides for her and their children and tells you that “someday you’ll meet someone who understands”.

To the woman whose definition of “sick” is a sinus infection.

To the woman whose definition of “tired” is the feeling you have when you wake up 20 minutes before your alarm clock goes off or miss your morning coffee.

To the woman whose definition of a “medical expense” is Benadryl.

To the woman who has a hard time scheduling her annual dental *and* gynecologist appointment, because that’s just too many doctor’s appointments to remember. 

To the woman whose definition of “chronic pain” is the old volleyball injury that causes her knee to act up. 

To the woman whose entire hospital experience is based off of visiting her grandparents and giving birth.

To the woman who always asks, “I can’t remember, is the MRI the one for your heart or your brain?”

To the woman who responds, “You have to give yourself shots every day? I could never do that, I don’t like shots.”

To the woman who asks you why you’re yawning, and after you mention you started a new med that makes you feel tired, responds with, “I don’t know how you do it. I can’t work and keep up with my laundry, and I don’t have to deal with what you do.”

To the woman who texts you, “What’s the name of that disease you had in college? I saw something on the Today show about mouth ulcers.”

I am so grateful everyday for the gift of my health, because I know what having your world turned upside down feels like. Please, stop raining on my parade. 

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.

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.