by Trudi Schultz ’14
“How little the real sufferings of illness are known or understood. How little does anyone in good health fancy him or herself into the life of a sick person?”-Florence Nightingale
“Are you better yet?” This is a frustrating question that people living with chronic illnesses are all too familiar with hearing. If they say no, they sometimes get accused of “babying” themselves, being whiney or too pessimistic but if they say yes, they’re only living a lie. The second answer is more comfortable for the people asking the question but it’s only hurting the person who is already suffering. So, if you have a chronic illness, how do you respond? The answer is, “sort of.” Because if it’s chronic, that’s the point; it’s never going to go away and there is no “cure.” When you have a chronic illness, people often oscillate between periods of acute symptoms and other phases where they are “back to normal.” Chronic illness can take many forms and their trajectories range from slight interferences in one’s life to something life threatening.
However, it is the periods in between those extremes that often get brushed aside. These chronic illnesses are the ones that the sufferer can push through and act completely normal, tricking everyone into believing that is the case. But too often, they must suffer in silence because these are the invisible illnesses. These are the ones that do cause disturbances in life but aren’t devastating enough to truly be viewed with pity and sympathy by our society, like something fatal. But people do suffer, and they suffer even more from the stings of questions like, “Are you better yet,” “You just need to take your mind off of it,” or, my personal favorite, “You just need to learn to handle your stress better.”
My best friend’s mother suffers from Chiari malformation, an abnormality which results in pressure being placed on a portion of the brain at the base of the skull—the cerebellum—and causes severe headaches, dizziness and weakness. It can be addressed surgically to try and relieve some pressure, but there is no cure. Sometimes she goes weeks without symptoms but other days result in crippling migraines that no medication will relieve. My godmother’s daughter has alopecia, an autoimmune disease that targets the hair follicles, causing patches of hair to fall out. She isn’t “sick,” but think how you would feel if you had to wear a wig on your wedding day. Since then, she has not had to deal with it as severely, but she developed Rheumatoid Arthritis (RA), another autoimmune disease, which attacks the joints. Although there are medications to “manage” it, there is no cure for this either and as she struggles to keep up with a five-year-old daughter, she also struggles with aching joints.
I have TMJD, or Temporomandibular joint disorder. The TMJ is a sliding hinge joint directly in front of your ear that connects the jawbone to the skull and it’s largely taken for granted. Just think about how many times a day you use this joint when speaking, eating, chewing, laughing or yawning. Now imagine an intense pain there. Of course, pain is a ranging scale. Maybe you’ve stubbed your toe for a second, gotten shin splints from a particularly hard sprinting session, or a headache from not sleeping enough. Or maybe you’ve gone in for exploratory surgery, having a three-inch piece of your mandible removed to diagnose a bone infection. I’ve done these things, but I’ve also experienced searing, shooting pain in my TMJ that makes me clench my teeth, even though that only makes it worse. I have had such bad pain in this area that it wakes me up in the middle of the night feeling like someone just threw a brick at my jaw and all I can do is take some pain medication and wait with an ice pack for it to kick in. I have known what it’s like to be in excruciating pain. But I have also dealt with the excruciating frustration at people’s reactions because of it.
Like pain, TMJ cases vary. This past summer, I patiently listened as my dental hygienist read my chart and said, “Oh, you have TMJ? Me too! You know, sometimes when I wake up my jaw feels a little stiff, but if I just open and close it a few times, it’s fine. Have you tried that?”
Then, there are the “veteran” TMJ patients. These are the people who actually, like me, clench or grind their teeth subconsciously at night. This is also called bruxism. They are the ones who say things like, “Have you tried those night guards at CVS? Have you tried taking some Ibuprofen?”
But mine is not the usual case of TMJ, though I wish it were. I go through what my oral surgeon and I have come to call “flare-ups;” periods of intense symptoms that cause my joint to swell, resulting in reduced opening of my jaw. The best sensation I can describe is opening your jaw and then having it lock up after a few centimeters. Sometimes, if I catch it early enough, I can take an anti-inflammatory before the swelling gets really bad. Other times, the swelling progresses rapidly to the point where I can’t even open my jaw enough to fit a spoon or fork with food on it in my mouth. So I eat yogurt and drink liquids until it subsides in about a week. But before I get there, I take the harsh anti-inflammatory, Prednisolone, to attack the swelling. This drug brings on a whole other set of obstacles. Right on the side of the bottle, a warning reads, “May cause dizziness”, which is a crippling symptom if you’re walking around a college campus. So while I deal with waking up in intense pain every three hours and the side effects of prednisolone, there’s also just the whole life outside of the flare up that doesn’t stop. Friends and teachers understand when you say you aren’t feeling well today because you caught the Flu, but some don’t understand when you say, “I’m having a flare up of TMJ.” It takes about a good week to quell the swelling and for my joint to return to normal, not to mention the usual week of weaning off the prednisolone, but college can’t get put on hold for seven days. Life moves quickly and it doesn’t wait for the body to become healthy again.
Sometimes, the biggest problem with chronic illnesses, is not just dealing with the pain and other symptoms, but the ways people react to your invisible illness, including health care providers. Too often, chronic illnesses are about making patients into actors. Pain can be managed with medication, trial and error systems of treatments can be administered, and activities can be avoided that worsen symptoms. We’re taught to sweep everything under the rug, to be fighters, to maintain Oscar-worthy performances of normality, even during our worst flare-ups. Because after all, “at least it can’t kill you.” But people with chronic illnesses don’t just deal with living with something that will never be cured, they deal with re-organizing their life around the affliction. They know perhaps better than anyone that nothing rings truer than the old saying, “if you don’t have your health, you don’t have anything.” People with chronic illnesses are losing a major possession that everyone else usually takes for granted. They live with this realization, in addition to their illness symptoms, every day. So, on behalf of everyone who suffers in silence while putting on their best act, please don’t ever ask someone with a chronic illness if they’re “better yet,” , because they probably aren’t. Just ask “how are you doing?”