On Understanding Chronic Illness from the Outside

I’ve written before about the new trend that is hashtag Lyme disease but the fact remains that when most people hear of someone suffering from Lyme, they don’t really know what that means. Ok, you have Lyme disease. But you look fine. And you go to work everyday. And you have friends and relationships and hobbies. You even go on vacations and out to dinner. So you’re tired and achy, or so you say. I’m not sure if I totally believe this Lyme thing is real, but if you say so. I think you secretly just like the attention or really love using the term “self-care,” aggressively and taking fistfuls of supplements. By the way, have you tried CBD?

I get it, I really do. Unless you experience something yourself, it’s very hard to understand. Even close members of my family don’t really know the extent of how well or unwell I’m feeling at any given time. And when you don’t look sick on the outside, it’s even harder. Lyme can be so radically different for every patient. There are over 100 possible symptoms, which can range in severity from very mild to very severe, and which can come and go over time. Some patients are bedridden, unable to work or get dressed, while others can maintain a fairly normal life and manage their symptoms well. I myself fall somewhere in the middle. There are days where I’m relegated to the couch with a Netflix marathon and days where I’m out and about painting the town red.

Here I am wearing a very large hat on the beach in the Dominican Republic and having Lyme disease at the same time. Who knew!?

So what are the symptoms of Lyme? Here is the list of symptoms from the Global Lyme Alliance. I have added an asterisk* to the ones that I myself have personally experienced. Of course these symptoms are also present in many other diseases and conditions, which is why Lyme often goes misdiagnosed. Please consult your doctor or medical professional if you’re experiencing problems with any of these symptoms! I am, obviously, not a professional.

LYME SYMPTOMS

Head, Face, Neck:

• Headaches*
• Facial paralysis (“Bell’s palsy”)
• Tingling sensations *
• Stiff neck *
• Sore throat, swollen glands
• Heightened allergic sensitivities
• Twitching of facial/other muscles *
• Jaw pain/stiffness (“TMJ”) *
• Change in smell or taste

Digestive/Excretory System:

• Upset stomach (nausea, vomiting) *
• Abdominal pain *
• Irritable bladder
• Unexplained weight loss or gain
• Loss of appetite, anorexia

Respiratory/Circulatory Systems:

• Difficulty breathing, air hunger *
• Night sweats or unexplained chills *
• Heart palpitations *
• Diminished exercise tolerance *
• Heart block, murmur
• Chest pain or rib soreness *

Psychiatric Symptoms:

• Mood swings, irritability, agitation *
• Depression and anxiety *
• Malaise *
• Aggressive behavior / impulsiveness
• Suicidal thoughts (rare cases of suicide)
• Overemotional reactions, crying easily *
• Disturbed sleep: too much, too little, difficulty falling or staying asleep *
• Feeling as though you are losing your mind *
• Obsessive-compulsive behavior

Cognitive Symptoms:

• Forgetfulness, memory loss
• Attention problems, distractibility
• Confusion, difficulty thinking *
• Difficulty with concentration, reading, spelling *
• Disorientation: getting lost in familiar areas

Reproduction and Sexuality

Females:

• Unexplained menstrual pain, irregularity *
• Reproduction problems, such as miscarriage, stillbirth, premature birth
• Extreme PMS symptoms *
• Pelvic pain *

Males:

• Testicular or pelvic pain

Eye, Vision:

• Double or blurry vision
• Sensitivity to light *
• Eye pain *
• Floaters

Ears/Hearing:

• Decreased hearing
• Ringing or buzzing in ears*
• Sound sensitivity *
• Pain in ears

Musculoskeletal System:

• Joint pain, swelling, or stiffness *
• Shifting joint pains *
• Muscle pain or cramps *
• Poor muscle coordination, loss of reflexes
• Loss of muscle tone, muscle weakness

Neurologic System:

• Numbness in body, tingling, pinpricks *
• Burning /stabbing sensations in the body *
• Burning sensations in feet
• Weakness or paralysis of limbs
• Tremors or unexplained shaking *
• Seizures, stroke
• Poor balance, difficulty walking
• Increased motion sickness, wooziness *
• Lightheadedness, dizziness *
• Encephalitis (inflammation of the brain)
• Meningitis (inflammation of the protective membrane around the brain)
• Encephalomyelitis (inflammation of the brain and spinal cord)
• Difficulty with multitasking
• Difficulty with organization and planning *
• Word finding problems*
• Slowed speed of processing *

Skin Problems:

• Erythema Migrans (rash)

General Well-being:

• Decreased interest in play (children)
• Extreme fatigue *
• Unexplained fevers (high or low grade)
• Flu-like symptoms (early in the illness)
• Symptoms seem to change or come and go *

Other Organ Problems:

• Dysfunction of the thyroid (under or over active)
• Bladder & kidney problems (including bed wetting, urgency/frequency to urinate)
• Newly developed beef or meat allergy (usually from Lone Star tick bites)

Doing tree pose next to a tree with Lyme disease. Look! I’m not in bed AND I’m doing a physical activity. Wellness!

Whew! Even when faced with a list of symptoms it’s hard to picture. The list says “neck pain/stiffness,” but it doesn’t say “neck pain so severe that it makes you nauseous and you can’t go to work.” It says, “headaches,” but sometimes I get headaches so bad they last for days at a time and never let up, even when I’m sleeping and after 4 months of physical therapy. “Joint pain,” can range from general aches to pain so severe that I can’t put on my own socks or walk to the bathroom without help. You get the picture. And if you don’t, make an effort. Especially if someone you care about is suffering. No matter what their social media feed portrays or how they look on the outside. We are capable of being both in pain and smiling. We go to parties when we’d rather be at home. We go to work when we know we should be taking a sick day. Or a sick year for that matter. We don’t always talk about it because we know people don’t get it. But we love the ones that do.

And, yes. OF COURSE I’ve tried CBD. Thanks, Susan.