I have a confession to make. In a different life –the one before I became symptomatic –had I known a person with Lyme, a person like me now, I’m ashamed to admit I would have likely doubted her authenticity. How on earth can a person be so sick one day, barely able to walk, according to posts, and then seen in the grocery store the next day? How can she look perfectly fine, but claim such poor health that she’s unable to work?
It doesn’t make sense, right?
Lyme disease isn’t the only illness that works this way. From lupus to fibromyalgia, there are numerous “invisible illnesses” operating in the same fashion, causing onlookers to question the level of the patient’s debilitation and, sometimes, sanity. As a society, it is ingrained in us to believe what we see and to question what we don’t. Unless we are living with a chronic illness warrior, we don’t see the symptoms, making it difficult to imagine the suffering. When we do see these individuals, they typically appear healthy. Perhaps less sparkle in and a little darkness under the eyes, but that could be the case for any tired parent.
Our minds automatically shift to question the legitimacy of the illness because what we see does not match what we are supposed to accept. Some indirectly question verbally, saying, “Well, you don’t look sick. You look great!”
Others keep the doubt inside, mentally disqualifying the severity of the invisible illness. This subconsciously lets the onlooker “off the hook;” there is no need to worry or to offer help because everything appears normal.
Maybe this friend is just seeking attention. As often as she posts about her illness, she must be obsessed with it, right?
Plus, since she “had to” retire from her career, supposedly because of debilitating symptoms, so she has plenty of time to rest. After all, she gets to be home all day. Her house should be impeccably clean. She claims the fatigue is so deep and the pain is so constant that she’s physically unable to keep up, but that doesn’t correspond with the very visible fact; if she can attend her son’s soccer game, why can’t she work? She can’t possibly be that sick.
I doesn’t add up, and intentionally or inadvertently, we become skeptical.
In a different life, I remember one particular friend sharing her story of the exhaustion and odd migratory pain of fibromyalgia. I nodded and probably said some platitude like “I’m here if you ever need me.” But I’m positive I didn’t get it. I didn’t understand that simply sharing her story was in itself a quiet cry for help. By testifying to her suffering, she was seeking something I didn’t grasp at the time.
You see, the invisible illness warrior is in a continual battle. Her body is at war with an enemy, and though the wounds are not visible, they are there. Not just the physical pain, there are mental scars as well. She, too, questions her sanity. Society’s need for the logical has not escaped her. She doesn’t understand why her body seems to have betrayed her. She’s tired of being sick and tired. Her doctors have probably even suggested that part of it is anxiety or stress. She’s heard the phrase “it’s all in your head” before, and it makes her wonder. Question. Doubt. Maybe they’re right?
But they can’t be. She knows the pain is real because she deals with it daily, yet it doesn’t make sense. How can we walk on the moon, but not have a real treatment for this disease? She’s frustrated and tired and, Lord, she has never felt so alone.
So she tries to connect with someone. She may not be cognizant, but she longs to hear the words “I believe you.” She knows no one can “fix” her. She just wants to be validated.
Before I became sick, I don’t think I understood her need. In the busyness of my life, I couldn’t have fathomed her world. The pain, the fatigue, the bizarre symptoms, the pills, the doctor appointments, the sleepless nights, the loneliness –in my world of teaching all day, then taxiing my children all evening, I was entirely too healthy and too busy to get it.
It’s embarrassing to admit how naive I was before Lyme disease shattered my perceptions, but I’m pretty sure the majority of society is still equally naive. We are living in a see-it-to-believe-it world. Our perceptions revolve around that premise, and though we undoubtedly know individuals with invisible illnesses, we are sheltered from their depth of suffering, both physically and mentally, simply because we cannot see it.
Even pain itself is subjective. One cannot see pain; we can only see the cause or the side-effects, like facial and body language. The pain itself is isolated to its victim. One of the most irritating moments in a hospital is when the nurse inevitably asks me to rate my pain. To give my pain a number between 1 and 10 is bewildering. Because of the consistency and level of pain I’ve endured the last three years, my #4 is likely someone else’s #8. I don’t want to look like a wimp, but at the same time, I want them to take my suffering seriously. I second guess the ridiculous pain scale every time, yet this is the best way for the medical staff to document and treat pain.
It is invisible even to the people who specialize in it. Even they struggle to objectify pain. Is it any wonder we are a society of skeptics? Is it surprising that our first instinct is to doubt an invisible illness warrior because we cannot see the war they are fighting?
Add to this the fact that what we do see, in person or on social media, contradicts the claims. For example, three days ago my Lyme was flaring and I was so sick I had to scoot on my bottom, step by step, to get downstairs. Any pressure on my ankles was blindingly intense, causing me to vomit or pass out. My brain was a haze of pain, frustration, and overwhelming sadness.
The very next day I woke tremendously –and scientifically unexplainably –better. Nothing in my treatment or actions had changed, yet I could walk. I could even drive! My daughters and I ran errands, stopping at a sundry of businesses and sharing a leisurely breakfast in town. Sure, there was pain, the constant hum of it coursing from my feet to my head, but I felt like I’d won the lottery. For the first time in ages, I was blessed with a normal morning out with my kids. It was euphoric.
It was also guilt-inducing. Just the day before I had blogged about the crippling effects of the Lyme flare. That fact explained the questioning glances and offhand comments. It didn’t make sense to me and I lived it; how could it make sense to so many viewing it from the sidelines?
I’ve said this before. This is not how sickness is supposed to transpire. We are supposed to get sick, get diagnosed, get treatment, and either get better or, frankly, die. This is path we have witnessed repeatedly in our own lives. You get the flu, feel like crap, rest, and get better. You get pneumonia, cough constantly, take an antibiotic, and get better. When the disease takes on a pattern more like “you get sick, you gradually (might) get a diagnoses, you get treatment, you get sick, you get a different treatment, you get sick, you try a homeopathic treatment, you get better….oh no, you’re sick again….,” it goes against all our experiences with sickness in our lives.
It takes a conscious shift in perspective to provide the love and support an invisible illness warrior needs. It takes a concerted effort to reach out, continuing a friendship she simply doesn’t have the energy to always maintain. She will likely cancel plans and often won’t answer the phone, but it takes you being the understanding friend, knowing that she would give just about anything to be in your shoes instead of her own. She misses her old life; heck, she misses herself. She misses the days when showering wasn’t the biggest and most draining event in her day. She wishes she could play with her kids, have a normal adult conversation, and, please, please God, have one day, just one, without a bit of pain.
Her expectations, honestly, have dropped so low at this point, it won’t be too difficult to provide what she needs. Validation. “I believe you.” Tell me about it.
That’s about it.
Okay, that’s not completely true. She dreams of fairies waving their magic wands and meticulously cleaning her house. It hasn’t been spring cleaned since she got sick. She’s had to learn to accept the clutter and mess, but she’d bibbity-bobbity-boo away in a heartbeat!