asthma, Christine Miserandino, chronic disease, chronically ill, compassion, consumer, consumers, denial, despair, disability, hope, hospitalizations, hypochondriac, hysterical, illusion, immune system, isolation, lazy, medical anomaly, motivation, over-reacting, producer, rare infections, recovery, self doubt, shame, slacker, social security, spoon theory, SuperWoman
At the age of 35, shortly after giving birth to my second son, I rolled in to my “journey” of disability.
I strapped on my roller blades, something I’d done a thousand times before, but, before I’d pushed off from my car, lost my breath. This was my first full blown asthma attack, and it was terrifying. I sat for over 30 minutes, struggling to breath. Eventually it dawned on me that sitting was not going to help me breath, so I took off my skates and drove home. If I had a crystal ball through which to see the next 15 years of my life, I would have done things quite differently.
The weekend happened to be my anniversary, and my spouse had planned a weekend get-a-way. He was clearly annoyed when I told him I couldn’t breath. He was not receptive to my suggestion that instead of our getaway plans we go to the hospital. He admonished me for over-reacting, offered to get me an over the counter inhaler at the drug store, then put my bags in the car. As we set out for our “romantic getaway” I sat quietly stewing in a sense of shame.
I was a producer. I was a good producer. I was raising my step son and two biological children while working full time. I took care of the children and our home, while paying my half of the bills. I was SuperWoman. I prided myself on my strength and unending energy. I cleaned our house top to bottom every Saturday morning. After church on Sunday I went to three different groceries store, picking up the sale items at each one. I did laundry every day, cooked 9 out of 10 meals, ran the household errands and exercised, all while working full time and raising the children. I did it all without missing a beat. I was living proof that women could have it all. I was not a slacker. I was the anti-slacker.
Until that day.
I spent our romantic weekend in varying degrees of suffocation. Each time I thought I was going to die someone would tell me how great I looked, reinforcing my spouses’ assertion that I was over reacting.
On Monday I made an appointment with my doctor, and was told I was having a full blown asthma attack. At this time, the height of HMO’s, primary doctor’s were being encouraged to handle asthma cases in their own offices, rather than referring to a specialist. My doctor, unfamiliar with the mechanics of asthma, accused me of “not trying hard enough” on my breathing tests. I can understand why. My tests claimed I was breathing at 30% capacity, which should have put me in the hospital. Certainly I should not have looked good. She put me on high doses of prednisone which required me to get checked on every other day. I spent the next 3 months going to her office 3 times each week, spending over 2 hours between the checking in, the appointment, the bloodwork and the rescheduling. During each of these appointments she chided me for not trying hard enough. I did this while working full time, raising the children and taking care of the home. At the end of the summer she finally referred me to a pulmonologist who was shocked and dismayed when he saw my breathing test. He understood the intricacies of asthma, one of which is that we are able to breath in, but not out. To the uneducated, this makes it seem that asthma sufferers aren’t trying hard enough, are over reacting, are hypochondriacs. By the time I reached the man who would become one of a team of doctors, I believed all of these to be true. I believed I wasn’t trying hard enough, I was over reacting, I was a hypochondriac. I had also gained 25 pounds from 3 months of prednisone. I was not in a good place.
This doctor tried to convince me that I was really sick. He begged me to take care of myself, to act swiftly when my breathing became labored, to rest, and eat well and treat my body with gentle compassion. His advice fell on deaf ears, thus beginning what would be a fifteen year struggle to accept that I was now a consumer, not a producer.
I quit my full job, staying on part time. That lasted about a year, by which time I was too sick to do even that. As the years went by not only did my lungs get worse but I developed other autoimmune disorders. Severe allergies, hashimoto’s thyroid disease, chronic sinus polyps and infections, celiac disease and eventually bronchiectasis. I had three sinus surgeries and my thyroid was removed. I began getting rare, unexplained infections, in both my sinuses and my lungs. Each week brought a new insult. Each week I slipped further into despair, praying it would stop, that I would get myself back. I became delusional. After a few years of repeated infections with no medical explanation I began believing that each new round of antibiotics or new treatment would restore my health. I started scouring the internet, trying each new “cure”, with unwavering faith that I would finally be “healed”. In a good month I was sick 20 of the 30 days, and on each of those 10 good days I had hope. I was stuck on a merry-go-round of illusion and denial.
If you are reading this you probably know all about the humiliation accompanying chronic disease. I was raised to produce. I started working at 12, and had never stopped. I had been raised to provide for myself and my children. I could no longer do that. Compounding the issue was the phrase I heard everywhere I went, and came to loathe: You Don’t Look Sick. And it was true. I never looked sick. Even when suffering a rare lung infection normally only seen in CF patients, I never looked sick. In fact, while in the hospital with a pseudomonas cavitated lesion in my lung, I looked great. Doctors, residents, nurses, perhaps even janitors, donned the necessary mask and protective clothing required to come gawk at the girl with the deadly lung disease who looked great. I was a medical anomaly. While I was able to grasp why people were staring, I was completely unprepared for the impact this would have on my psyche.
Acquaintances had no idea what I was dealing with, and therefore didn’t hesitate to ask the “stay at home mom” to be homeroom mom, or bake extra cupcakes for the PTO fund raiser. I was often met with disgust when I refused to help. I can only imagine the whispers behind my back. “Look at her – perfectly capable and doing nothing, but she won’t be homeroom mom. Despicable.” It wasn’t long before the other moms ignored me. It might have been I that ignored them, keeping my eyes firmly facing down wherever I went, lest I be called out for being a slacker. The end result was the same: isolation.
Those who knew me understood, as well as they could, what I was dealing with. There are limits, though, to the understanding of even our closest loved ones. As years went by they forgot who I once was, and came to wonder if I was simply just not “pulling my weight”. I was given advice like “be positive”, “get up every day and exercise”, “join a support group, or make new friends”, “stop feeling sorry for yourself”, or my all-time personal favorite: “just do it”. It was a never ending cycle of humiliation and judgement. Each exclamation, intended to motivate and inspire me, sent me further down the rabbit hole of despair.
One of the most confusing aspects of chronic illness is the fact that we/I can rise to the occasion when absolutely necessary. This is elegantly explained by Christine Miserandino, in her “Spoon Theory”.
Christine explains that while there will be occasions in which we can do more than usual, we will pay a price for that. How can a healthy person relate to this? A healthy person, like I before my disability, could compensate for a wild weekend by sleeping a few extra hours. A disabled person can not. There is no give in our lives. There is no give in my life. I know that a night out means a week in, a week “vacation” a month of illness and recovery. And, as many times as I tried to explain, I am met with “buck up kiddo” responses. I still marvel at this. When I tell a person:
“imagine you have a cold, every day. On the second day of your cold you have a business trip. You take dayquil and get on with it. When you get home you sleep some extra hours, spend a weekend in bed and, lo and behold, come Monday, you feel better. Come Friday you are back to normal. Now, imagine that the cold never goes away. You never get to Monday. You haven’t seen a healthy Friday in years. That is my life”.
This concept, so simple to me after years of living it, is beyond the grasp of healthy individuals. I’m met with sweet smiles and nods of agreement, only to hear the “buck up” lecture the next week.
I knew, after 4 years of illnesses, that I qualified for disability. In a moment of fear, frustration, and self-loathing I’d looked it up. I knew that I was considered fully disabled according to our government. I refused to “give in” and apply for benefits. Instead, I pushed myself to work, as often as I could, in my family owned business. Allowances, huge allowances, were made. Each illness brought me further into the sphere of despondency, and each period of health had me chasing my “purpose” with abandon. I ended in up in more than my share of quandaries. A week of good health made me commit to more work hours, or volunteer activities. Each week of good health reinforced what I desperately wanted to believe: I was a Producer. Each week as a producer left me in bed longer. I was literally killing myself in my zest to “contribute”. As the years ticked by, as I suffered more and more rare infections, as my immune system took a turn for the worse, I doggedly held on to the belief that ultimately, I was a Producer.
In 2010 I’d had enough. I was able to work, at most, 4-5 hours a week. My family business was struggling, not only under the weight of the recession, but under the weight of my denial. I had no choice but to do what I should have done all along – apply for disability.
The shame I felt was palpable. One of my first steps was talking to my main doctor. She told me she was surprised to learn I wasn’t on disability, as I was one of her sickest patients. She assured me that not only did I qualify for this benefit, I had earned it through my years of being a “producer”, and I needed to take advantage of it. She went on to say that it would allow me the freedom to focus on my health. She told me of less ill patients who, once on disability, were free to concentrate on staying healthy and therefore achieved some quality of life. While I knew I should have felt reassured, all I could focus on was the last part: some quality of life. What an odd phrase.
She and I completed the paperwork, my medical records were compiled, I went to the testing the government required, then I waited. For three months, with no income at all, I waited. When the denial letter came in the mail I spiralled down. They had seen through me, I thought. The government had called me out as a slacker. They were the only ones willing to tell the truth: I was lazy and hysterical. They alone had seen through me, and they called my bluff. It was confirmed that I had become one of “them” – those that suck off the teet of the system, the consumers.
I honestly don’t remember what led me to hire an attorney. Perhaps it was my doctor, maybe it was the shear humiliation upon reading that rejection letter. When we finally got to my hearing, 18 months later, I was stunned to learn that every report, every test, every doctor along the way said the same thing: she is disabled. I had assumed my government sponsored breathing test proved I was’t trying hard enough. I was convinced that the government appointed doctors had sold me out, said I could work, no problem. None of that was true! In fact, every document, every test, every doctor said the same thing: this girl is disabled, in every sense of the word.
What a crappy system! We live in a system that preys on our self-doubt. The powers to be, whoever they are, understand how humiliated we chronically ill but “look good” feel. I can’t imagine how many have gone on to drop their case, feebly trying to eek out a living under dire circumstances. I know that I would be dead. I would have pushed myself beyond reason, until my immune system shut down, allowing an otherwise ubiquitous bacteria to claim my life. How many have suffered that fate?
Two years after starting disability my doctors prediction came true. Giving myself room to breath, allowing myself the time and freedom to take care of myself, the recurrent infections began to slow. My “acute” illnesses became less frequent, and my energy increased to the point that I was finally able to care for myself. My lungs are now the same as they were five years ago. They are still bad, but they are no longer getting worse.
I now find myself in an awkward position: proving myself still “worthy” of disability. What a ridiculous phrase to utter: “worthy of disability”. I’m still trying to wrap my head around it. Every good breathing test (and by good I mean 60% capacity) stills my heart with fear. What if “they” decide I am no longer disabled? What if “they” look at these tests and say “hey you, slacker, go back to work”. What if they decide that me keeping myself healthy is just not enough. I owe more. I live suspended between terror that I’ll have no income, and giddiness that I can breath. I bounce back and forth, wondering which side I’ll land on as I fall asleep at night.
I am now able, with the assistance of a very generous employer, to work 8 to 10 hours a week, sometimes more! For the first time in over 20 years I feel worthy to walk amongst the healthy. For the first time since I quit my full time job I feel like I am more than a lowly consumer, taking advantage of our “system”.
For the first time in 20 years, I no longer cringe when someone says “You look good”. I am among the few that understand how deceiving looks can be.