I’d like to tell you the story about two women.
The first was in her early 20s at the time, had severe chronic migraine and fibromyalgia. She had three young children, one of whom with her own set of medical diagnoses, as well as developmental delays. She hurt every single day. Her pain was often an eight, nine or ten on the hated pain scale. She was always exhausted. Not “tired,” not “sleepy,” but exhausted. She frequently described the worst of the fatigue days as feeling like she was walking through molasses with weights strapped to her legs.
She was constantly coming down on herself because she was terrified her children would only remember how sick she was as they grew up, and they would miss out on their childhoods because of her health. Her husband was incredibly supportive, but his job frequently took him away for extended periods. His bosses were not at all understanding, and any time he had to ask for time off work to help her or their child get to an appointment, he would catch no end of hell. She was frequently told it was in her head, or accused of making it up to manipulate her husband’s schedule so he would stay home.
When they initially started having children, her husband and her had decided they both wanted her to be able to stay home with the kids when they were young. As time passed, it became obvious it was also necessary for her health. That she would not be able to work even part-time, due to her pain and fatigue. A few hours at the beach with her kids would land her on the couch for a week at a time, or longer. Standing for any length of time caused severe pain in her legs and back, and left her limping for weeks.
Very few people saw the extent of her pain, she hid it even from most friends. She was frequently completely unable to function, often spending days and weeks between trying to live a normal life half-comatose on the couch while her young children watched TV, just awake enough to make sure they were safe. She knew this was not a workable long-term solution, that it was not healthy for her or her children. She felt like the worst parent on the planet, constantly.
Related: 3 Books That Help Me Manage Chronic Pain
But every time she asked for help from physicians, she was met with disbelief. Her symptoms and the severity of their impact on her life were blatantly ignored. She was “too young,” she was “just depressed.” She tried for years. Begged for help. At the time, fibromyalgia was just getting real traction as a recognized condition, and more people believed it was a made-up condition than not. Nobody had a direction for her, nobody had viable treatment options. After a while, she just stopped asking. She stopped talking about it.
The second woman in this story is in her late 30s. She has chronic migraines, fibromyalgia, lupus, Sjogrens syndrome, arthritis and several spinal injuries. She hurts every single day. Her pain is frequently an eight, nine or ten on the same hated pain scale. She often describes her fatigue as crushing. She also has three children, though they are older. Two of her children have high medical needs, as well.
She has had better luck with physicians, and has managed to find a team of doctors who listen, who appropriately present and discuss treatment options and take her symptoms seriously. Because of this, she has been able to gain a direction to take her treatment, but is still learning to manage her conditions.
She works full-time, and often longer than full-time hours, out of necessity. She spends her days in meetings, on the phone, in appointments and doing paperwork. She wakes up exhausted and in significant pain, spends the entire day hoping she can make it to the end of it, while at the same time knowing by pushing herself, she is perpetuating a very damaging cycle for her health. But because she has to, she gets up and gets dressed. She makes it to her meetings and appointments. One by one, she checks off items on her daunting to-do list, always having to prioritize things that are the most important and the most time-urgent. She has a terrible memory, and frequently forgets details of conversations, sometimes within minutes of the conversation. But because of her job, she has to remember certain things, so she has learned to use tools to help her.
By midway through the day, her pain has spiked. Brain fog has set in, but she still has hours of her day left to get through. By the end of the day, she usually collapses on the couch, hoping she can do enough to manage her pain so she has a chance of sleeping that night. She has to remind herself to stretch and move gently, because she knows she will be worse off if she doesn’t. If she has the energy, she will soak in the tub before bed. Most days, she doesn’t have the energy. Up the next day to rinse and repeat.
People know she has health issues, and she frequently gets asked questions like, “How do you do it?” Or told things like, “But you look so good!” And, “My other friend has lupus, too, but theirs is worse.” She gets complimented on her organization skills, and people often come to her for help with things because she’s known to be a good critical thinker, or because it’s something she deals directly with in her job so they know she is a good resource. People often only see how functional she is, and they miss the reasons behind why she has to function, as well as the struggle she’s gone through to get to where she is at. They see the results of her ability to push through and function, and not the price she pays.
Surprise… both women are me.
I’m still the same woman in both stories. I still have high levels of pain and fatigue every day. The same pains and fatigue that rendered me nonfunctional 18 years ago have become the expectation for daily life. I wake up, and my first conscious thought is pain. If I can manage to get to sleep, I dream of pain. Every moment, of every day. My pain didn’t get better. In fact, over the years, it’s gotten worse, with a wider variety in types of pain. My fatigue has continued to be debilitating. I still describe it as walking through molasses with weights strapped to my legs many days.
On top of having a hectic enough schedule to make a fully healthy adult exhausted, I have to go through my day and try my best to mitigate things that will aggravate my pain and fatigue. Which ironically, takes additional precious energy. Some days, I am more successful than others. Some days, I fail utterly, and pay the price.
Life didn’t stop because I had chronic pain. It didn’t stop because I needed a week-long nap. Not wanted. Needed.
So, what changed? Simple, and not so simple. I learned to utilize every possible tool around me. I learned to use reminder lists and shared calendar events for appointments, to compensate for my terrible memory. I’ve learned to navigate the insurance and medical systems, because it was that or pay thousands upon thousands in medical bills. I’ve learned coping mechanisms. They don’t change the degree of my pain, but they do help me get through the things that I have to do.
Unfortunately, this also means many people don’t see the toll it takes. They see me appearing to function at a high level. They didn’t know me when I wasn’t functional. They don’t see the decades of physical, emotional and psychological struggle it took to get here, and they don’t see that my ability to “push through” has actually become a detriment to my health. That struggle continues. I’m in the fight of my life, and most people in my life have no idea. The truth is, I actually need to be significantly less functional, for the sake of my organs and my sanity.
Even if you share the same condition with someone, their experiences and yours may be similar, but each is unique and individual. We are all at different stages with our illnesses, and we each cope differently.
Don’t tell your friend with chronic illness that your cousin’s friend’s daughter had this, too, and theirs was worse. Don’t joke they should just “suck it up,” because I can pretty reliably guarantee you they already are. Don’t tell them because they’re functional, they’re healthier than Joe next door. Even within the chronic illness community, I have encountered this.
Because the hard truth is… you have no idea. Remember always that what you see is the surface. This is true of life in general. And what you see on the surface is never the whole story. Be kind.