Invisible Conversations

How to Use Communication to Support Those with Invisible Disabilities

Alexandra Guillot

• Publisher: New Degree Press
• Year: 2021
• ISBN:
  9781637301654
• Edition: 1
• Topic: Desarrollo personal
• Subtopic: Comunicar y hablar en público

Imagine dealing with a challenge, such as chronic pain, panic attacks, or complex PTSD. How might you struggle to live your life without the assistance needed to complete daily tasks? Now, imagine that you are an adolescent juggling all of these stressors.

In Invisible Conversations: How to Use Communication to Support Those with Invisible Disabilities, author Alexandra Guillot answers these questions and more while teaching young people with invisible disabilities how to effectively communicate their needs. Combining research, interviews from individuals with various conditions, and personal experience, Guillot explains what is needed to live well despite these physical challenges.

Invisible Conversations will show you how to:

• Be your own advocate
• Explain your concerns to your health professional
• Communicate your needs to your school or work
• Initiate conversations about your disability on your own terms
• Find resources created to support you

If you or someone you care for is frustrated with understanding, explaining, or discussing a condition, this book is a must-read for those with disabilities and their allies.

Chapter 1

Speaking with Your Doctor

Growing up, I was a relatively active child. Around seven or eight, I tried almost every sport my town offered for at least a day. My attempts at soccer, gymnastics, and cheerleading never really worked out. I enjoyed playing tennis with my mom, but there were no teams or lessons for children my age. Since I couldn’t really stick to a sport, I joined my mom on her daily morning walks.

We’d wake up early in the morning during the spring and summer seasons before the start of school and work. We walked all over town, covering a new route almost every day. My mom and I would share stories and laugh with one another, then end our morning routine with our favorite breakfast sandwiches. I loved walking with my mom and enjoyed the feeling of being active, until one day when I felt a dull ache in my lower back.

I was quick to tell my mom about my back ache; I told her everything on our walks and this pain was no exception. We couldn’t figure out what could be causing my pain, and our usual two-mile walks dwindled to a brief stroll around the block. My back pain impacted other parts of my day, regardless of if I was stationary or moving. That’s when the slew of doctors’ appointments began.

We began with my pediatrician, then moved on to specialists, who all ordered several tests to be conducted to understand the source of my pain. I had MRIs, CT scans, x-rays, and numerous blood tests that revealed nothing about what could be causing my pain. Growing complaints of worsening aches warranted another round of tests in case they missed something the first couple of times.

Just as my mom and I had been upset by the lack of answers in these tests, it seems my doctors were too. Early on in my journey to understand the source of my pain, a number of doctors eventually dismissed it if they couldn’t find a cause through any of their diagnostic tests. They thought I could be lying about my pain for attention, or that it was just in my head and therefore wasn’t real. Seeing so many physicians in a short period of time, only to receive these explanations, forced me to consider if they were actually right.

I felt confused and frustrated by their responses to my pain: “Your pain isn’t real—it’s all in your head.” “You’re not in pain, you’re just looking for attention.” “Your mind is making this pain up.” At such a young age, I couldn’t understand what it meant when they said the pain was in my head. I still don’t understand what that means. All I knew was that I was hurting all of a sudden and it had only gotten worse, no matter what my mom and I tried to alleviate it. What kind of help was this diagnosis supposed to give me?

Despite my fatigue and increasing anxiety about these tests, my mom continued to search for more doctors, and hopefully more answers. I grew up spending much of my time in waiting rooms instead of school. My pain continued to evolve as I grew and started to impact my shoulders, ankles, and head. I missed several school days due to these symptoms no one could explain.

During the evenings, I was sent to physical therapy for my back pain. I can remember many days of coming home from school, eating a quick dinner, and being driven a half an hour to my physical therapy sessions. I felt anxious and out-of-place at these appointments, as I was the youngest patient by at least forty years. My pain would skyrocket by the time I returned home from these appointments and I couldn’t feel any difference in how I felt in the long-term.

Because my pain continued to change all the time, my mom and I were hopeful one day my new symptoms would be recognizable and I could be diagnosed, and eventually find relief. It was many years of doctors’ appointments, tests, and uncertain diagnoses, but we never stopped searching for other opinions to understand what I was experiencing.

The many years of doubt from my doctors caused me to develop a sense of distrust toward the doctors I saw. My chronic pain made me feel helpless. At the start of my diagnosis journey, I put all my faith into my medical team to understand what I was going through and tell me how to handle my symptoms. The doctors I relied on to give me some sort of explanation instead told me my pain was my problem. In these cases, I felt my last chance to find some relief was taken away from me, and I was left back where I started.

At the start of my freshman year of high school, I was experiencing persistent back pain, stomach aches, headaches, and sore skin. Random stabs would ripple across my body, dozens of tiny pains each minute. By this point, I had been seeing various specialists for seven years. One morning that year, I woke up and was unable to walk due to excruciating pain in my ankles. Just like before, we found another doctor, except this time this doctor was able to look past my sudden ankle problem and took in my whole experience with pain. She had heard of a rare condition called Amplified Musculoskeletal Pain Syndrome and pointed us to the Children’s Hospital of Philadelphia for further guidance.

My eagerness and distrust instantly clashed. On one hand, I was thrilled to hear there were others like me, and our symptoms had a name. On the other, I was concerned this small lead would just bring me back to square one. My distrust remained even when this first clue as to what my diagnosis may be came along. Nonetheless, my mom and I took this idea and ran with it. Thankfully, this lead would turn out to be the first day of my treatment journey.

Just under a year later, I was admitted into the Children’s Hospital of Philadelphia’s Amplified Musculoskeletal Pain Syndrome (“AMPS”) in-patient program. While there, I completed a full day of physical and occupational therapy, broken up by extracurriculars such as psychotherapy, art therapy, music therapy, and aquatic therapy. My physical and occupational therapy sessions pushed me to the brink, bringing my pain to an all-time high. However, the exact point of the program was to “push past the pain.” Your pain could not excuse you from completing these exercises and activities.

Because of this, I quickly came to believe my therapists had somehow resented me. I had never felt so much pain but there was nothing I could say to them to express what I was feeling. No matter what I said, I was met with the same response: push past the pain.

As my pain grew, so did the distrust toward my therapists. Their mantra didn’t feel different from what so many doctors had told me in the past—that the pain was in my head, that only I could control it, that I should just push past it. I internalized their response as a dislike for me and lack of care. My distrust transformed into fear as I couldn’t decipher whether they wanted me to get better or worse.

I believe my feelings toward my therapists were valid but looking back now I almost feel silly to have even felt this fear and distrust in the first place. My therapists showed me the toughest love anyone had ever shown me before. They knew what it would take to get me to feel better, even if I didn’t believe in the process myself. On my last day, I realized just how thankful I was for their help during the program. Unlike other doctors, they never denied my pain. They accepted and understood what I was feeling and told me to keep pushing anyway. Because of this, I am almost entirely pain-free after completing the program.

Nearly five years after I completed the program, I was able to connect with Sam, who was also part of the in-patient AMPS therapy at her local hospital. Given the uniqueness of the program, I had never expected to find anyone who could relate to my experiences, but both Sam and I could relate to one another and our time in the program.

When I described my feelings toward my therapists to Sam, she expressed an understanding I hadn’t received before. During our conversation, Sam had joked that the therapists were like robots: they didn’t seem to show any emotion or sympathy for the patients. She shared a tactic she tried during the program to get the therapists to open up a little. “I would try to crack jokes just to get them to show they’re humans!”

These therapists aren’t just human, they’re super-human. As I’ve reflected on my time in the program, I had never met a medical team that cared more for me and my well-being. I experienced a different type of care than I was used to receiving, but I’m eternally grateful for their help either way.

Through the arduous diagnosis process, I was able to come to the understanding that doctors do know what they’re talking about—but so do I. Also, my mind and body are as much a part of the diagnosis and treatment process as a doctor’s opinion. If I don’t feel my experiences are treated equally and wholly, then I’ve learned to move on and find additional opinions until I’m satisfied.

My experience in the AMPS program was not only the first step to managing my condition, but also the first step toward fixing my feelings and assumptions toward doctors. The many years of doubt from doctors have taught me how to speak up and demand better care for myself, but no one should have to wait so long to receive proper treatment.

My first piece of advice is to prepare for your appointment.5 The more details you can provide to the doctor, the closer you’ll be to a clear diagnosis. This tip applies to both general care and specialist appointments, no matter how many of each you’ve been to. Consider journaling the following information about your symptom(s):

• What your symptom(s) are and what they feel like

– Jot down some adjectives to describe what the symptom(s) feel like.6

– For example, if you’re experiencing back pain, what does the pain feel like? Is it aching, stabbing, or throbbing? Think of some scenarios to describe what the pain mimics.

• When you first felt your symptom(s), when they occur, and how often they occur

– It’s important to try to find patterns in your symptoms, that way you and your doctor can find some connections between your symptoms and when they occur.

– Take note of what you’re doing when you experience one of your symptoms, paying attention to details such as:

■ What position your body is in

■ If you’re being more active or more stationary

• Any recent changes in your routine, diet, exercise, and so on

Bring this information to the appointment to provide as full of a picture as possible to your physician. While collecting these details, remember to jot down any questions you may have as well. During your appointment, keep taking n...