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kerry heckman

I’ve Been Sick So Long I Can’t Remember What it Feels Like to be Healthy

by Kerry Heckman
#MyLymeLife

Lyme disease, like a shadow, is always there even if you don’t see it.

 

Every facet of a person’s life is affected by it. It determines when and what we eat, when and how we sleep, how and if we work, how and if we are able to exercise, what our relationships are like, etc. There’s life and then there’s Life With Lyme.

It was 10 years ago, when I had the first sign that something was seriously wrong with my health. At the time I called it a bad shoulder and chalked it up to improper technique while exercising. Two years later, I was in the ER with a rapid heart rate, which was in time diagnosed as a thyroid disorder. A couple of years after that I felt so ill during the summer that I couldn’t get off the couch for two weeks.

Then things started to happen more rapidly, the shooting pain, night sweats, headaches, and blurry. Eventually I was diagnosed with Lyme disease. It’s been ten years of doctor’s appointments, physical therapy, scans, and blood tests.

At this point I can’t remember what it feels like to be healthy.

I forget what it’s like to skip a meal because I’m not hungry and haven’t planned out meals days in advance. I have to eat three meals every day, because I take a handful of medication with each one. Most people can plan simple meals and eat on the go. Since I’ve been eating a gluten-free, dairy-free, and sugar-free diet, meal planning and prep is a big time commitment.

I forget what it’s like to go to an exercise class and push myself to my limit. I used to take cardio fitness classes and enjoy getting my heart rate up as high as it would go. Now, I have to be conscious of how much energy I expend and not deplete myself. When you are healthy, exercise gives you more energy, when you have a chronic illness, it drains your energy.

I forget what it’s like not to have to keep track of meds, supplements, and other treatments.

Every week I spend a half an hour dividing pills into little containers. There are five prescription medications and 10 supplements that I have to keep track of for refills (which is low for most Lyme patients). I have a very detailed calendar of my complementary treatments and doctor’s appointments, that I constantly have to plan my life around.

I forget what it’s like to not have to ration my energy.

In the past there were few limits on my energy. I could plan activities from sun up to sundown. Now I have to look at my days and weeks and determine how much activity I can handle before I make plans. If I have a particularly busy day or week, I need to take a day or two off to recover.

I forget what it’s like to spend money on wants, and not medical bills.

Each month I shell out around $300 for medications and supplements. As for medical bills, I always reach my out of pocket maximum and then have to pay doctors for treatments that are not covered by insurance. My health is priceless, but it sure costs a lot of money. Moreover, I took a part-time job and cut my earnings by a third. It hurts to ponder what that money could buy, so I try to keep my mind off of it.

When I was healthy, I saw the doctor once a year for a check up, then maybe once more times for a vaccine or acute illness.

This past year, I’ve had 68 appointments for either a doctor, treatment, scan, or blood draw. I’m guessing that is low for some Lyme patients and high for others, but that’s  a lot of time out of my life scheduling and attending to appointments that manage my illnesss.

I forget what it’s like to not have symptoms every day.

With Lyme not a day goes by that I don’t have at least one symptom to remind me of my illness. It rotates between pain, insomnia, brain fog, fatigue, headaches, heart palpitations, and some days some combination or all of the symptoms are present. This leads to anxiety about what symptom will manifest next in addition to the other symptoms. It leaves me wishing for one day to pass without a symptom.

So, what is it like to feel normal?

Most people never feel completely normal all the time, even if that unease isn’t health related. There are however many persons who go throughout their life and don’t ever give a thought to the things a chronically ill person thinks about. Normal for me would be to live a healthy life, but for my medical matters to be mere background noise, not the main event.

While I forget what it’s like to be healthy, I also forget what it’s like to live without gratitude for what good health I do possess. I forget what it’s like to live without a community to lean on, and most importantly, I forget what it’s like to take life for granted. I’ve learned how important health is to overall well-being and plan to improve mine in any way possible.


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

lyme disease

The Roller Coaster of Lyme Disease

by Kerry Heckman
#MyLymeLife

Living with Lyme disease comes with constant ups and downs

 

The MRI results were sitting in my email inbox a week before my doctor’s appointment. I couldn’t bring myself to look at them. Too much was riding on it. As a complication of Lyme disease, I have an infection in my spine, which no antibiotics seem to touch. It’s  been almost three years since it was discovered and no doctors can find a solution. Six months earlier, though, I started a new antibiotic and my doctor thought this was “the one.” I didn’t want to learn it was just another failure.

As soon as my doctor came into the room I knew my MRI results weren’t good. He had a serious look on his face, in sharp contrast to his usual jolly demeanor. I listened while he told me there was no change in the results and that maybe it was time to consider a more aggressive treatment. Getting this news was like being at the top of the highest peak on a roller coaster and then plummeting suddenly to its lowest point. I felt the same queasiness in the pit of my stomach, but it wasn’t a thrill. All the hope I’d built up, only left me disappointed.

I officially got on what I refer to as the roller coaster of Lyme in January of 2016, but like most Lyme patients I’d been on a health roller coaster most of my life. The ups and downs have been unrelenting. There are the short-term ups and downs of daily life, like when you have a good day immediately followed by one where you can’t get out of bed. And there are the long-term ups and downs of treatment. I start to make progress and then have a huge setback, like the one I had last month when I got the results of my MRI.

As Lyme patients, we try to make sense of the ride. We wonder if a peak or valley is due to a new medication, changes in seasons, or our hormone cycles. All these things do have an impact, but then there are times where there is no reason at all. Those are some of the lowest lows, because we don’t know what to do, lost with no answers and no momentum to get back up the hill.

With chronic illness, the jarring ups and downs take an emotional toll. We stop trusting our progress and are always waiting for the other shoe to drop, because, unfortunately sometimes it does. Imagine feeling the best you’ve felt in months, only to have a new symptom crop up out of nowhere. You stop trusting your good days, which can turn so quickly into bad days. There isn’t a day when you just feel at peace. This is why the question, “How are you feeling?”, has been such a hard question for Lyme patients to answer. I always feel like I’m lying, because people usually only see me on my good days, when I’m more likely to say I’m feeling well. On my bad days, I don’t leave the house.

To date, the roller coaster’s the best metaphor I’ve found to describe what it’s like to live with Lyme. It’s not an illness where you have steady forward progress, instead you go up and down, hopefully trending upward in the long run.

Despite being knocked down time after time, I choose to live in a state of hope, rather than despair. Why do I continue to hope even though it’s been three years with no change on my MRI? Because I have a choice. It’s the one thing I have control over in this illness. I can choose despair, or I can choose to keep up the fight. I think hope is the better option. Some people say if you build your hopes up, you risk more disappointment. I don’t think that’s true. I’m going to be disappointed either way on this roller coaster, and I’d rather live my daily life in a state of hope and positivity rather than being guarded and cautious. For me, hope is the better option.

Yesterday was a bad day, today was a good day. Who knows what will happen tomorrow, but one day the roller coaster will come to an end. My goal is remission, and when I finally reach it all the ups and downs will have been worth the ride.

Read Kerry’s last blog, “When I Miss My Life Before Lyme“.


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

When I Miss My Life Before Lyme

by Kerry Heckman
#MyLymeLife

Do you reminisce about your life before Lyme?

 

This morning my co-worker walked around to each of our offices to tell us that there were muffins the conference room left over from a meeting. Every time I passed the conference room the fresh blueberry muffins were calling out to me from the paper plate. I argued with myself throughout the day — it’s just one little muffin. What could it hurt? But I know what it would hurt. It would ramp up the inflammation in my body, eventually leading to aches and pains in all my joints. All that from a plate of muffins, which most people wouldn’t even think twice about.

I try not to live in the past. It’s not a good use of my time and energy to wonder what could have been…What would’ve happened had I never gotten sick? What if there had been better information about prevention at that time and I had gone to the doctor after those tick bites? What if my body was able to fight off the bacteria?

But there are days. Days when I miss staying out late at night. Days when I miss eating anything I want. Days when I miss not taking handfuls of pills and supplements with every meal. Days when I miss feeling full of energy.

When you are diagnosed with a chronic illness your future becomes full of unknowns. Chronic illness is a lifetime companion. Even if remission occurs, there is always the fear that it could come back, so I doubt I’ll ever entirely return to my old ways of going to all day festivals or binge-watching TV shows until three in the morning. This new life is here to stay, and sometimes I really miss the old one.

Summer is especially difficult. Some of my fondest memories are of being on a roof deck restaurant in Chicago. My friends and I would go there on warm days and drink cold beer and eat giant soft pretzels cooked on the grill. Because of antibiotics my skin is now sensitive to the sun, so roof deck restaurants are no longer an option. I probably wouldn’t enjoy it anyway, because the diet I follow doesn’t allow alcohol or gluten.

I don’t spend as much time outside during the summer anymore, because I’m afraid of reinfection. I miss walking on nature trails without fear and not worrying when my dog runs behind our garage into the brush. I used to see the beauty in a field of tall grass, now I just see the potential for ticks.

What do I do when I miss my life before Lyme? I allow myself to be disappointed for awhile. It’s okay to be sad that things are different now.

After the disappointment, I shift my perspective and give myself some gentle reminders. I have a chronic illness, not a terminal one. My illness is not rare, and there is a community millions strong I can lean on for support. My illness may not be curable—yet—but it is treatable.

It’s only then that I’m able to think about the ways I’m grateful for Lyme. Lyme has offered me the chance for personal reinvention. Instead of just being the person who can’t do things she used to, I’ve decided to become the person who explores the new things I am able to do. I’ve taken up meditation and gentle yoga. When I make travel plans, I look for places with plenty of opportunities for rest and relaxation. I’ve shifted my finances away from nights on the town and toward massage therapy and organic food. My focus has shifted from outward to inward and I’m okay with that. I like the new, low-key version of me.

Lyme has also taught me not to take anything for granted. I may not be able to eat a muffin or sip beer on a roof deck, but there is still a world of things that are available to me, like the occasional gluten-free cupcake or going to an organic farm-to-table restaurant with big open windows that let in a cool breeze in from outside.

There will always be reminders of what it was like before Lyme and sometimes I will feel nostalgic and even sad. It’s taken some time, but I’ve learned to love my life with this diagnosis.

Read Kerry’s last blog, “Meditation and Lyme: How It Helps, How It Doesn’t“.


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Meditation and Lyme: How it Helps, How it Doesn’t

by Kerry Heckman
#MyLymeLife

Without a cure, meditation can provide a relief of Lyme symptoms.

 

Sometimes meditation is offered up as a cure-all for chronic illness. This is certainly not true, and occasionally dissuades people from trying it. In my experience, it hasn’t cured my Lyme disease, but the benefits have been remarkable.

Meditation became a part of my self-care routine during my ordeal to find a diagnosis. I was so anxious about not knowing what was going on in my body that I was having frequent panic attacks and couldn’t sleep.

The slow process of speculating about a cause, scheduling tests, and then waiting on the results was so stressful I couldn’t focus on anything else. To take my mind off the waiting game, my integrative doctor suggested a mindfulness-based stress reduction class.

On my first day, I walked into a room of about 10 people. I was surprised to see a group of average looking adults. We went around the room and shared with each other why we were taking the class. We all had different reasons for being there, health issues, stressful jobs, relationship problems, but the common theme was the same—anxiety was taking over our lives.

The class was an educational seminar run by a psychologist. He showed us a powerpoint presentation that taught us about the “fight or flight” reflex. This response of the autonomic nervous system is only supposed to activate when there is an immediate threat to our lives. However, in people with anxiety it’s turned on all the time. The problem for people with chronic illness is that when the fight or flight reflex is turned on, the immune system is turned off; therefore, the body is not able to heal. This was a huge wake up call for me. I knew I had to do everything I could to put my body in a healing state.

At the end of class, the psychologist led us through a guided meditation in which we visualized putting our racing thoughts on leaves as they passed by in a stream. It was the first time in months I felt like I could let my worries go.

Each week I went back and learned a little more about the nervous system, the brain, and mindfulness strategies to use throughout the day.

The psychologist provided us with a digital recording of a 10-minute meditation we could listen to between classes. Whenever my heartbeat would start to increase signaling an impending panic attack, I put on the meditation and tried to breathe through it. Occasionally, I had to listen to it twice, but it was always helpful.

A few times when I was talking to my husband, he could tell my thinking was spiraling downhill. He suggested I do the meditation and then we could resume our conversation. Once I’d taken a 10-minute pause from fear-based thinking, I was able to rationally discuss the situation and decide on the next step.

Meditation will not fix everything. I’ve heard some Lyme patients get annoyed because people encourage them to meditate as if it’s a quick fix to a complex, serious illness. Meditation will not cure fatigue, vitamin deficiencies or swollen joints, but it does help with some symptoms. Meditation has had the following benefits for me:

Calms the “fight or flight” reflex: Prior to practicing meditation, I spent all day and night in “fight or flight.” Meditation and mindfulness taught me how to use my inner voice to talk myself down from imagined threats.

Prevents emotional extremes: I used to go off on my husband and say mean and hurtful things. Eventually, I learned this was because of “Lyme rage,” a symptom of neurological Lyme. We tend to become very frustrated and then unleash on those we love. After regular meditation for about three months, I noticed I wasn’t losing my temper anymore. I still became frustrated but my emotions stayed in check.

Helps with sleep: Insomnia is one of the hallmark symptoms of Lyme. Before I started meditating I couldn’t fall asleep or stay asleep. In combination with a very detailed nighttime routine, meditation has taught my brain how to shut down and prepare for sleep. When I have difficulty falling asleep I turn on a guided sleep meditation and it usually does the trick.

Taught me how to breathe through pain: Meditation has not changed my level of pain, but it has helped me cope with it. Remaining in a relaxed state, even when dealing with high levels of pain has prevented my thoughts about the pain from making it worse. If I stay mindful, I’m able to think clearly about what I can do to minimize the pain.

My practice consists of sitting for a guided meditation for five to 20 minutes first thing in the morning, followed by a few yoga poses to loosen up my spine. There are smartphone apps and websites that offer guided-meditations or meditation music. I learned that if I don’t do it first thing in the morning I won’t do it at all. Now it’s a part of my daily self-care routine.

Meditation may not be right for you, but you can still practice mindfulness. Try to stay in the present moment while doing dishes, going on a walk, or reading a book. Every moment in the present is an opportunity for healing.

Read Kerry’s previous blog, “Chronic Fatigue or Feeling Tired?


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Chronic Fatigue or Feeling Tired?

by Kerry Heckman
#MyLymeLife

There is a difference between chronic fatigue and feeling tired. Have you developed chronic fatigue as a result of your Lyme disease?

 

I remember the moment when my husband said, “I get it,” and I knew he did. It was the time he’d developed an acute bladder infection and was stricken with a high fever. I had to go to work, so he took himself to urgent care. Later that evening he said, “I think I was putting on a show at the doctor’s office, I probably didn’t even seem sick. Then, as soon as I got home I completely crashed. I haven’t moved from this chair since.” That was it. The feeling I’d been trying to describe to him for years. It’s like using every last bit of adrenaline to get through a show, only to immediately collapse in the wings afterward. He could finally understand what I go through on a daily basis.

Everyone can relate to what it feels like to be tired. There are a million things to do and never enough time in the day. We stay up too late, clinging to the few hours we’re not working, and then slog through the morning fueled by cups of coffee.

Chronic fatigue—a common symptom of Lyme—is completely different. Chronic fatigue is a medical diagnosis and cannot be healed by a good night’s sleep and a day without commitments. It is there when you wake up, there with you all day long, and there when you fall asleep. Chronic fatigue presents differently in every person. Here are a few perspectives from others in the Lyme community:

“I feel like I am walking around with weights attached to my body.”
“The fatigue is like every little thing that you need to do, like say fold laundry, that would take a healthy person a half hour, takes a person with Lyme hours. We have to rest in between. I actually spend more time resting up to do something, than actually getting it done.
“Not quite up to starting the big game, but the big game is every day.”
“Feeling like you have been hit by a train or have a terrible case of the flu and are incredibly weak and tired, and that you can only get off the couch or out of bed with a huge effort. It is hard to think straight and nearly impossible to get anything done.
“It feels like you just finished running a marathon that you hadn’t trained for…and at the end of the marathon, you also got the flu and also got struck by lightning, which caused everything in your body to shut down.”

My available energy comes and goes in cycles, and sometimes it’s difficult to know how much energy I will have to spare. This is especially true in social situations, which seem to be the most draining. One day, I had the energy to go out with friends. I felt great, better than I had in months. We got Mexican food and talked for hours. We were joking and laughing so much, I almost forgot about my illness. I thought, I must be getting better, I haven’t had this much stamina in months. When I went to sleep my spirits were high.

Then I woke up and I couldn’t get out of bed for two days.

This is the difference between chronic fatigue tired and just being tired. There is a limit to what a person can do, and when they overdo it, it takes days to get the energy back just to take a shower. This was the feeling I found so hard to describe to my husband, which he finally understood when he got a serious infection.

Some Lyme patients are wheelchair bound, or spend months or years confined to a bed. I am fortunate in that, as long as I don’t run myself into the ground, my bouts of fatigue last only two to three days. I can’t imagine what it is like to go days on end and never feel the energy to get out of bed, but that’s the harsh reality for many Lyme patients.

It’s hurtful and invalidating when people compare chronic fatigue to just being tired. Lyme patients’ fatigue is caused by our bodies constantly fighting off illness, then on top of that we have to do everything else other people do on a regular day. We get so used to it, we forget what it feels like to be normal.

Next time, when you’re discussing your chronic fatigue and someone says, “I’m tired, too,” politely remind them it may sound like the same thing, but there is absolutely no comparison.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Why You Should Never Make Fun of a Restricted Diet

by Kerry Heckman
#MyLymeLife

For some patients with chronic illness, including Lyme disease, a restricted diet can improve their lives. So why the ridicule?

 

The jokes are everywhere. There is a popular meme that reads, “It’s gluten-free, sugar-free, dairy-free, soy-free, egg-free, & fat-free. They call it ‘water’ and you can buy it at Whole Foods.” Implying that the only thing someone on a restricted diet can have is water and only shop at grocery stores with a reputation of being pretentious. (Not that anyone on a gluten-free, sugar-free, dairy-free, soy-free and egg-free diet would ever eat anything that was fat-free, but that’s beyond the point).

I’m on a restricted diet and I’m often embarrassed to talk about it. Why am I embarrassed? Because there is a general consensus that special diets are a fad and only obnoxious people eat that way.

Why do I eat the way I do? By the time I was 34, I had already been diagnosed with two autoimmune disorders, later to be correctly diagnosed as chronic Lyme disease. I was in so much pain I couldn’t turn over in my bed without screaming. The doctors found so much inflammation in my spine and muscles in my back I was hospitalized for five days and underwent two biopsies. Conventional doctors offered no viable solutions.

An integrative medicine doctor encouraged me to try something called the autoimmune protocol diet, which is an extremely restrictive, low inflammation diet with no grains, no dairy, no sugar, etc. After only two weeks on the diet my back pain subsided and I was finally able to sleep. Eventually, the diet became too restrictive for me, so I modified it to meet my needs. Basically, I avoid processed foods, gluten, dairy and sugar. I had to give up a lot of the foods I love, but it changed my pain level from a steady eight to an intermittent two. When it came down to living in constant pain or giving up gluten, I had to choose the latter.

Nevertheless, I still get rolled eyes and laughter when I discuss my diet, even from people who know I’m sick. To be honest, before I got sick I probably would’ve reacted the same way. What people may not understand is that we don’t want to eat this way, we have to eat this way. We love gluten. Gluten makes doughnuts doughy, bread spongy, and pasta unsticky. It was next to impossible to give it up, and I still miss it every time I pass a bakery or pizza place.

The harsh reality is there has been an upsurge in people diagnosed with autoimmune and chronic diseases. You probably know someone with one of these diseases. Do you remember knowing so many people with such diseases the 1980’s or even the 1990’s? Probably not. I know I didn’t. Autoimmune disorders and chronic immune system dysfunction numbers are skyrocketing.

Integrative and functional medicine practitioners believe these illnesses are caused in part by the standard American diet. If people better understood the link between of certain foods and inflammation, they would realize it’s no laughing matter. We need a wake up call that our immune systems cannot handle all these inflammatory foods. For some patients with chronic illness changing their diet can save their lives. For a good example, read about Dr. Terry Wahl’s battle with MS and how she got her life back when she changed her diet.

Consider approaching the issue from a place of compassion. What if you had to give up your favorite foods? What if one piece of birthday cake made you ache for days? What if you had to stop going to all your favorite restaurants? What if you couldn’t have a glass of wine on a Friday night?

I understand restrictive diets are challenging to accommodate in social situations. It’s why many people on these diets stop going out entirely, leading them to social isolation and even depression. They are forced to choose between friendships and unrelenting symptoms.

In these situations the host can offer to dine at their own house or choose an activity that doesn’t involve food. As the demand for healthy options keeps growing, I am constantly finding new restaurants that fit my dietary restrictions, so maybe ask your guest where they are able to dine.

There are a few areas of concern one should be conscious of when discussing dietary restrictions. One is that it is very expensive and time consuming to eat a low-inflammation diet; therefore, people with limited resources might struggle to maintain it. A second concern is that some people don’t have dramatic results from the diet, which can be disheartening. And finally, some people take restricted diets to the extreme so it can itself become an eating disorder.

Everyone deserves to eat what they want without being put down. We have to stop mocking people who try alternative ways feel better. There are people who don’t have chronic illness who follow a special diet and the reasons are still valid—such as losing weight, gaining energy, and feeling better about themselves. Someday not so far in the future, no one will be on a restricted diet, because everyone will be.

I love lighthearted fun and joking around, but it’s time to take this one off the table.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

How to Be Your Own Health Detective

by Kerry J. Heckman
#MyLymeLife

Getting an accurate Lyme diagnosis can take years. With poor diagnostic tools and limited support patients are often forced to be their own health detectives. Here are six tips to help in the process.

 

The test result email popped into my inbox. I was driving and couldn’t look until I was stopped at a red light. This was it. The final clue in a seemingly never ending mystery. The diagnosis I’d been waiting almost two years to get. Two years of crippling health anxiety, and a slow steady decline, all resting on one simple blood test.

Many people who are eventually diagnosed with Lyme disease spent years leading up to it searching for the right diagnosis. Because of poor diagnostic tools, we’ve had to learn to be our own health detectives.

My journey started almost three years ago.I’d been ill for many years prior, but doctors assumed all my symptoms related to an autoimmune condition, Grave’s disease. Then, in May of 2014, my right leg started to feel “heavy” and was aching. I looked down and noticed it had blown up like a balloon. I ended up in the ER. At first, the doctors took it seriously, because they thought it was a blood clot. After the test came back negative, I was quickly discharged with no answers.

I went to my primary care doctor and she told me to wait a month and see how I felt. I immediately found a new doctor and he told me that unless the swelling was more than two inches different from the other leg I should simply ignore it. Ignore it? I was just supposed to walk around with a swollen leg for the rest of my life? No tests were ordered, no follow-up appointments were scheduled, so I moved on to another doctor, and another, and another.

Like a detective on an important case, looking up symptoms on the internet became my full-time job. I’d get lost down a Google rabbit hole for hours on end. My husband would practically have to pry my fingers from the keyboard. Every time I discovered a new lead I would follow it as far as it would take me, usually to another annoyed doctor, who’d send me away with an exasperated look. This continued for six months. Then I developed a new strange symptom a stabbing pain in my side. Again I went to the emergency room. This time I was admitted after a MRI revealed what looked to be an infection in my spine. It took the doctors five days to determine the infection wasn’t spreading rapidly enough to cause immediate concern. I was discharged again with nothing but another piece of paper with the diagnosis left blank.

From there I was passed between a rheumatologist and infectious disease doctor for another six months. When I went to see the rheumatologist, he said it was an infection; when I went to see the infectious disease doctor he said it was rheumatological.

But I didn’t give up. I found an integrative medicine doctor who was willing to think outside the box. She ran some preliminary tests for Lyme disease, and when they came back suspect, she referred me to a Lyme-literate medical doctor.

Those two years were some of the most difficult in my life, but I had to stay on the case. Here’s some advice on how to keep moving forward even when the puzzle seems impossible to solve.

How to Be Your Own Health Detective:

  1. Start thinking like one

From the very first symptom, everything is a clue. Keep an ongoing list of every symptom you experience. Even if it doesn’t seem like an important one, write it down. Keep a folder of all your test results. Compare and contrast the results over time. You never know what will end up being the missing link.

  1. Ask the right questions

Make a list of all your doctors. When a question pops into your mind, write it down under the heading of the best doctor to answer that question. By the time of your next appointment, you will a have a thoughtful list of questions to ask.

  1. Be confident in your symptoms

Before I had a diagnosis, I found that many of my symptoms were minimized or ignored by doctors. Some of these symptoms seemed small on the surface, but ended up being the most important clues. Don’t allow a doctor to tell you a symptom isn’t real,  is all in your head.

  1. Set boundaries when using the internet

Google and Internet forums are a good tool for health detectives. The problem is it can become an enormous waste of time and energy. Some good boundaries to set are to spend no more than 15 minutes a day researching symptoms or asking questions on forums. Make sure you verify everything you read with a trusted doctor; there is a lot of dangerous misinformation on the internet.

  1. Talk about your illness

When you talk about your symptoms with other people, sometimes they have good input. For example, back when my leg first became swollen, a friend of my mother suspected an infection. This was something none of the doctors had mentioned, but I kept it the thought in the back of my mind. It turned out she was right.

  1. Never, ever, ever give up

The worst thing you can do for your health is to give up. Sure, you’ll hit brick walls, but you’ll have to learn to break through them. Nothing is more important than your health, so you have to keep exploring until you feel satisfied with your care. If you can afford it, get a second opinion (and a third, and a fourth). Determine how far it is reasonable for you to travel and how much it is reasonable for you to pay, and then go to the best doctor you can find who fits within those parameters.

I was stopped by that red light for just long enough to open the email. I was scared to read it. What if it’s just another negative test to add to the list? But it was “positive.” After two long years of no diagnosis and countless doctors, I had my answer. I had Lyme disease. When you receive a diagnosis it can be a strange mixed moment of emotions. You are devastated to have the illness naturally, but even more so you are grateful to finally know what it is. My detective work paid off.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

What It’s Like to Have an Illness No One Believes In

by Kerry J. Heckman
#MyLymeLife

4 Lyme Bloggers Speak Out About Living with Lyme Disease

 

A doctor recently told me, “I don’t believe you have Lyme.”

It’s not the first time I’ve heard it and it probably won’t be the last. I was diagnosed with Lyme after ten years of being undiagnosed and misdiagnosed. I didn’t believe it either at first. It took two positive test results, a specialist’s reassurance, and hours of internet research to finally become convinced. Each time a new doctor questions me, I doubt myself all over again.

What’s it like to have an illness no one believes in? The experience is different for everyone and we are all at different stages in our illnesses. It’s still early in my experience, so I asked four other Lyme bloggers to weigh in.

Christina Kovacs of the blog Lady of Lyme says, “I believe that the ‘experts’ who spread the lie of chronic Lyme not being ‘real’ do know better, but choose to turn a blind eye.” Yet even after five years of living with this diagnosis, she still believes there is hope.

christina kovacs_lyme blogger“In early 2017 it is much more difficult to deny the existence of Lyme. Borrelia spirochetes have been found in brain tissue during post-mortem autopsies, and even fetal tissue of miscarried babies. The voices are growing, and the science is growing, which gives validity to the pain of every patient. On top of that, we have amazing senators and representatives, who along with patient advocates have passed laws to further advance Lyme disease treatment guidelines.

“But overall, when I am confronted with a non-believer (be it a Doctor, a nurse, or a layman), I find it only fuels me. That doubt just lights a fire under me to fight harder to enact change. I feel very lucky that celebrities have lent their voices to Lyme disease awareness, because it shines a broad light of legitimacy on the cause.”

Kami Lingren writes the Living Grace blog and she believes even when we are faced with adversity from the medical system it is important to be your own best advocate.

Kami Lingren_lyme blogger“Living with a disease that is misunderstood, even disbelieved, can be heavy. It takes strength to repeatedly stand up for yourself in conversations with doctors who belittle, laugh (yes, literally), and minimize your symptoms and diagnoses—all for the simple fact that they cannot see or understand what’s happening in your body. I now struggle to view hospitals or doctor’s offices as safe zones, because they usually produce more pain than help. It won’t matter how excruciating my pain is, how many symptoms are overwhelming my body, or how very real my struggle to breathe is. The response is consistently ‘you’re fine.’ One thing’s for certain, though: you learn to rise up and take care of your own health and to find doctors who will listen to you and understand your illness. Because we’ve also learned this: that life and time are too precious to wait complacently.”

Lyme warrior and blogger Victoria Faling touches on one of the biggest issues for Lyme patients— the fear of family, friends, and doctors thinking we are making it all up.

victoria faling_lyme blogger“The hardest part about having an illness that no one believes in is that people think you are exaggerating or acting a certain way to get attention. People you love and trust start to question you (whether it’s outright or in their own minds), which makes you trust and love them just a little less. It makes you not want to share with anyone and close yourself off, so you can just deal with your health in the safety of your locked room. The hardest part is trying to act as normal and healthy as possible around others as to not make them feel uncomfortable, which only makes you feel worse because the acting takes so much energy. Having an illness that no one believes in makes you want to scream from the tallest mountain, ‘Believe me! I’m sick! The pain is real!’ It makes you wish everyone around you had to deal with your symptoms for just one hour so that they can understand. But you can’t do those things and that’s hard to bottle up and contain. The hardest part is how incredibly angry and sad you feel; lonelier than you ever thought possible.”

With all the emotional pain, Victoria believes there is a silver lining, “But it also makes you realize who truly loves you no matter what, no matter if you actually are crazy, because they stick around through it all, listen to every complaint you have, and hug you whenever you need it, even if you don’t want it.”

Many Lyme patients would agree with April Moor of the blog Fitness Nutrition and Moor

april moor_lyme blogger“There are many obstacles and struggles when you are a person suffering from Lyme disease. One of the largest is that you have an illness that not many people actually believe in.”

She compares the difference between living with Lyme and living with other diseases that are more well-known. “There would be walks completed in your honor, scientists would spend endless hours researching a treatment, insurance would cover your doctor visits and medications, and people would ask how you are feeling for the entirety of your illness. With Lyme, there seems to be a limitation to how much people care. Because we don’t often look sick, people don’t ask how you are feeling, they don’t understand why you are always tired, and how about those harsh diets that we are on, they definitely don’t support that. Lyme disease is a lonely and helpless journey that only fellow ‘Lymies’ understand.”

After a year of following and communicating with Lyme patients like these bloggers, I can’t believe anyone would deny their pain, suffering, and resilience. Because of the willingness of these four women to share their stories, I’m finally learning to trust myself and my team. The doubts are getting softer and my voice is getting louder.

Keep speaking up for yourself, keep speaking out. Lyme is real and you deserve to be heard.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

 

What to Do When You Get Bad News About Your Health

by Kerry J. Heckman
#MyLymeLife

Getting bad news is hard for anyone. For people with a chronic illness, like Lyme disease, it can happen often. Here are 8 tips to help you manage the bad news.

 

I went through three biopsies of my spine trying to find a reason why my MRI was so drastically abnormal. All three biopsies were inconclusive. This process is not for the faint of heart. It consists of fasting for an entire day, getting an IV, laying on your stomach in a CT machine, while the doctor sticks a large needle in a precise location within my back. During my first two biopsies, they took a sample of my bone, which I could feel them chip away. The sedative and twilight anesthesia helped, but caused me to throw up about an hour after I finished the procedure.

Each time I prayed for an answer to my long-awaited question, and each time the lack of a diagnosis stung a little more.

For people with chronic illnesses the medical tests are non-stop. My one good vein has so much scar tissue it’s hard to get blood from it anymore. Sometimes those test results are positive and hopeful, but many times they aren’t. The bottom line is when you get news about your health that isn’t what you wanted to hear, it’s very hard to cope with; and for people with chronic illness, it happens over and over again.

Here is some advice on how to respond:

1. Cry

You better believe I’ve cried a lot after a phone call from a doctor or an email from a lab. It’s okay to be disappointed, sad, and scared when you get bad news. Let the river of tears flow. Life is not always kind.

2. Talk to someone

When the news is bad, it can be helpful to talk to someone. This person can be your partner, parent, best friend, or a professional. Pretending you aren’t hurting and putting on a brave face won’t serve you in the long run.

3. Don’t let the test results define you

Test results are numbers on a page or the label of a diagnosis, but often these things are changeable, not fixed. I know one day my inflammatory markers will go down and the Lyme disease will be in remission. When I get bad news, I know it’s a measure of my current state and it’s only temporary.

4. Get a second opinion

If I hadn’t gotten a second opinion, or a third, or a fourth, I never would have gotten a correct diagnosis of Lyme disease. It’s also important to remember there is a time to gather new information and a time to contemplate what you know; try to find a balance.

5. Write down an action plan

When another spot of inflammation showed up on my CT scan, I was devastated and overwhelmed by the number of follow up tests and conversations with doctors that needed to take place. I was worried if I didn’t get it all done instantly something would get missed. I paused a moment and took the time to make a list of everything that needed to get done. Then, I put each item in order of importance. It helped to take all the anxious noise in my brain and lay it out in a strategic plan.

6. One step at a time

After you have developed your action plan, take one step at a time. You might not get all the calls made in one day. There may be tests that you have to be schedule far in advance or may take weeks for the results to come back. As long as you are marching toward the goal, don’t push yourself too hard.

7. Ask for help

Let’s face it, brain fog doesn’t necessarily lend itself to creating and following through on a detailed health plan. Ask your doctor, partner, or friend to talk it through with you. Maybe they have insights that you didn’t consider.

8. Look for a reason

I don’t necessarily believe everything happens for a reason. But my personal philosophy is even if there isn’t a reason, it still happened, so you have to make one.

When I had my inconclusive biopsy, a good friend said: maybe now isn’t the right time to find an answer. She was right. If I’d received a negative biopsy I might have given up the fight for answers, but since I had no answer I sought out a new doctor who ultimately led me to my Lyme diagnosis.

Each test, whether good, bad, or inconclusive is another clue along the path to recovery.

My mom recently had an abnormal mammogram and had to go through a biopsy of her own. With our stomachs tied in knots, my entire family waited for the results. We breathed a collective sigh of relief when the biopsy came back negative. When you get bad news about your health it’s important to remember that sometimes there is good news. I’ve had my share of positive test results. They’re just overshadowed by the negatives ones. Illness is a journey of ups and downs, for every dark of night there is the light of day. Waiting for the sun to come up is hard, but it’s there hidden just behind the horizon, ready to rise.


Opinions expressed by contributors are their own.

kerry-j-heckman-profile-picture_thumbnailKerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

How to Be a Good Partner to Someone with Chronic Illness

by Kerry Heckman
#MyLymeLife

How do I know how to be a good partner to someone with chronic illness? Because I have one. But that wasn’t always the case.

 

I was diagnosed with my first autoimmune disease shortly after my husband, Zach, and I got married. We’ve been married almost ten years, and I’ve been more or less sick the entire time. There was a time when Zach had very little patience with me and my ever changing symptoms.

Before I was diagnosed with Lyme disease, anxiety was one of my worst symptoms. I literally thought I was going to die. I would wake Zach up in the middle of the night, looking for reassurance for unexplained chest pain or a mole that looked different. I would jump to the worst case scenario in every situation, then perseverate on it for hours. After awhile he started walking out of the room, because he didn’t want to listen to it anymore. It felt like he wasn’t there for me.

Then, there was the year when I was really sick. I stopped being able to help out around the house and all the responsibilities feel on him. I couldn’t cook or clean, the laundry piled up in the basement. He wanted to go to concerts or out to a bar like we used to, but I was just too tired. By any definition, I was not a good spouse or partner and occasionally he would remind me of it.

blog_partner-quote-4

Yet something shifted after he came with me to my first appointment with my Lyme specialist. He developed patience with me. He started to listen more, and sit with me while we talked through my symptoms. Slowly we became partners in fighting Lyme.

Every day I hear heartbreaking stories of how chronic illness tears apart relationships and ends marriages. When you can’t see an illness, it’s very easy to think someone is faking it or taking advantage of the situation. Sometimes the healthy partner thinks “I did not sign up for this,” and takes off. Sometimes I think the partner leaves because he or she is not strong enough to watch a loved one suffer.

Some advice for partners:

Be there.

I’ve been known to break into spontaneous crying fits. I can only imagine it’s how annoying and frustrating that is for my husband. At first he tries to walk away and then I see the thought process going on in his mind as he slowly turns around sits down next to me. My crying fits only last a couple of minutes, then I take a few deep breaths and gather myself.

Just sitting with someone while they are breaking down is one of the most powerful things you can do, and you don’t even have to say a word.

Listen and ask questions.

Talking things out is how people process thoughts and emotions. Lyme has been described as a do-it-yourself disease. There is no standard treatment, so we have to make decisions about our treatment protocol, our diet, and our exercise regimen without much guidance. There are a lot of other things to process with chronic illness. We sometimes wonder why this is happening to us or if we’ll ever get better. Sometimes we don’t have “a point” or are not particularly good at making sense, but it helps just to talk.

When your partner asks you to read something, read it.

One of the symptoms of chronic Lyme is brain fog and we often have difficulty finding the words to express how we feel. Sometimes I find an article or blog post that I really relate to and I ask my husband to read it, so that he can understand me better. It’s a simple gesture, but it will bring you closer together. Do what you can to learn about the illness. You can even look for articles on your own, and bring them up to your partner.

Go to appointments when you can.

Like I said earlier, something changed after my husband started going to my appointments with me. I think a doctor validating my symptoms made it real for him. He knew I wasn’t making it up when the doctor said everything I was experiencing was a symptom of Lyme.

Embrace diet and lifestyle changes.

One of the most helpful things my husband has done was go on an elimination diet with me. He was having some health issues, but probably didn’t need to completely change what he was eating. It made it so much easier to do it together and we kept each other accountable.

There have been many times during this journey I have felt like a burden. Our money is spent on treatments rather than nights out, I have a strict bedtime of ten o’clock. I do not have the stamina to go to parties. But we still make an effort to make things fun, like cooking together, watching comedies to laugh together, and choosing low key events we both can enjoy.

Stand up for your partner to others.

My husband lives with me every day, while my friends see me only occasionally. He knows the truth about my illness, which I often hide from others. It makes me feel so supported when he speaks up about my illness to my friends and family. I get sick of defending myself and it’s nice that he is willing to take over.

Allow your partner space to heal.

This year my husband gave me the greatest gift he could ever have given me. He suggested I leave my job and take a part-time job. It’s allowed me the space to start the healing process.

Maybe allowing your partner to quit his or her job isn’t possible in your situation. Think about what else you can do to allow your partner space to heal. Can you put the kids to bed while he or she takes a bath? Can you help sort and pay the flood of medical bills? Can you give up a corner of your office for a meditation space? Any little bit helps.

Believe your partner, all the time, every time.

People with invisible illnesses, often feel just that, invisible. When we tell our coworkers we are in pain, but we don’t look like we’re in pain, we’re afraid they don’t believe us. A partner can be the one person with whom we don’t have to worry about being ourselves. Don’t second guess, don’t minimize, just believe.

blog_partner-quote-3

On the other hand, I have some advice on how someone with a chronic illness can be a good partner. Don’t expect perfection. Know that this is a hard road that no one asked for, including your partner. Express gratitude, even for the tiniest things that make your life easier.

Pass this article along to your partner. It may help to open a dialogue. However, be careful not to imply your partner isn’t doing a good job, which can easily make a person defensive. Pursue a dialogue on how you can be better partners to each other. As the patient, I have empathy for the caregiver. There is no recognition and no attention paid to your struggle. Doctors rarely ask the partner how they are feeling.

Lyme is a third wheel in our relationship. It’s something for which each person has to take some responsibility. Every day Zach is learning how to be a better husband to someone with a chronic illness. Sometimes I’m amazed at the information he has picked up about Lyme disease or my autoimmune conditions. He went from never wanting to talk about it, to bringing it up when he sees an article online.

All relationships take hard work, and when you add in Lyme it makes it ten times more difficult. While you are fighting the illness, the pain, and the fatigue, remember to also fight for each other.

Read Kerry’s previous blog, “Grieving the Loss of a Career to Chronic Illness“.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Grieving the Loss of a Career to Chronic Illness

by Kerry Heckman
#MyLymeLife

For an educator, the start of the school year is filled with energy and excitement. There are students to meet, classrooms to decorate, and coworkers to catch up with. There is an undefinable sense of hope that comes with a new beginning.

 

This fall, for the first time in ten years, when all the other educators went back to work, I wasn’t with them. Instead, I was at sitting at home watching the steady stream of “first day of school” pictures on my computer. My career as a school social worker was cut short by Lyme disease.

Two years ago, I thought I would have my job until I retired. It’s rare for someone to give up tenure, a pension, affordable health insurance, paid sick days, and summers off. However, this year I opted for a part-time job as a college counselor to focus on healing. I never thought I would be the person who checks the “part-time” box on questionnaires. My entire identity was wrapped up in my career.

I know I’m not alone. I’ve heard countless stories of teachers, doctors, and successful business people who were forced to leave behind a thriving career when illness struck. The careers they had worked their entire lives to build were suddenly gone or placed on permanent hold. Last year the mayor of Monticello, Illinois, resigned due to complications of Lyme disease. When he resigned at a town council meeting, he said, “I do this with great regret. It’s one of the hardest things I’ve had to do.”

I couldn’t agree more.

Leaving my job was truly the hardest decision I’ve ever made. This past summer, I agonized over whether or not to go back. I loved my job and I was making enough money so that I wouldn’t have to worry about the high cost of Lyme treatment. I’d developed lifelong friendships with coworkers and every day I got to make a difference in the lives of young people. On the other hand, I wasn’t getting any better, in fact I was getting worse. On a typical weekday I went from my bed, to work, to the couch, back to bed. I was living half a life.

i'd known other people who left jobs

I’d known other people who left jobs due to illness, and I always thought, “That will never be me. I will never get to that point.” I worked through the worst two years of my illness. The first year I missed 14 days of school because of doctor’s appointments, being bedridden and a hospitalization. The second year I pushed through the year only to crash for an entire month of the summer. For the last two years, the beginning of the school year felt less like returning home and more like a shift back into stress, fatigue and pain.

For people with chronic Lyme disease there comes a point where you can’t do the things you used to do. You may not be able to work, engage in creative pursuits, or even socialize anymore. For some people the reality is disability and incapacitation. The difficulty is compounded because Lyme is an invisible illness and outsiders don’t understand why you can’t work. Other people think not working or working less is a gift. They don’t think about the terrible suffering, the symptoms of the illness, or the fact that many people actually  want to work. They want to make a contribution to their family’s financial and emotional security and feel like they have a purpose in life.

When there is a loss, you need to go through a grieving process. You need to allow yourself to be sad, confused, and even angry. For me, it’s difficult, because I don’t know what to call myself anymore. I hold a social work license, but I’m not doing social work. I have to grieve the loss of what could have been, then find a way to move beyond it.

Recently, I’ve started walking a labyrinth in a nature preserve by my house. It’s a walking meditation where you walk along a circular path. It has many switchbacks and turn arounds, but you’re always moving closer to the center. I’d heard of labyrinths as a place to go when you’re going through a difficult time in your life. The first time I walked the labyrinth was shortly after I left my job. As I was walking the path one day, I realized it was a metaphor for life. There are setbacks and times you need to turn around and retrace your steps, but even so, you are always making progress. I didn’t know what was at the end of the labyrinth; when I got to the center, the word “hope” was spelled out in a mosaic. No matter where your life takes you, no matter the losses you must endure, whether it be illness, the loss of a job, or the loss the life you thought you’d have, it’s important to know at the center of it all is that tiny word, hope.

Hope like the first day of school.

The final stage of the grieving process is often referred to as “acceptance and hope.” During  this stage we stop wishing for the life we used to have and accept the new normal. Maybe one day I will go back to being a full-time social worker, or maybe not. Right now, I’m trying to look at the loss of my career, not as a loss, but as a beginning. Maybe my job needed to go away in order for me to find a different path, a better path.

Chronic illness has changed me. It changed the way I see the world and changed my goals. Even if the only goal right now is just to get better, I can’t think of a more noble one than that.

Read Kerry’s previous blog, “The High Cost of Telling Someone You Don’t Look Sick“.


 

kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

The High Cost of Telling Someone ‘You Don’t Look Sick’

by Kerry J. Heckman
#MyLymeLife

I remember the first time someone told me, “You don’t look sick.” I was sitting in urgent care and the doctor told me I had a rare infection in my spine after seven months of being passed from doctor to doctor with no diagnosis.

 

“No wonder they missed this. You don’t look sick, you’re so calm and composed.”

Little did she know the internal turmoil that had been going on in my head. I thought I was slowly dying, and that I would die before anyone could figure out what was wrong with me. One of my legs had blown up like a balloon, my inflammatory markers kept crawling higher and higher, and the pain had gotten so bad I felt like I was being stabbed in my side. But I guess I didn’t look sick.

On the final episode of The Oprah Winfrey Show in 2011, Oprah famously said, “I’ve talked to nearly 30,000 people on this show and all 30,000 had one thing in common—they all wanted validation. They want to know do you hear me? Do you see me? Does what I say mean anything to you?”

Lyme disease is the ultimate “invisible illness,” a name given to diseases you can’t see. Not only do many of us look normal, but our illness is not recognized by conventional medicine. We are told our symptoms are “all in our head,” or that we are “faking it.” The CDC and IDSA say our illness doesn’t even exist, referring only to Post-Treatment Lyme Disease Syndrome, as opposed to chronic Lyme disease, which according to the CDC website “almost always gets better with time.”

Funding for Lyme disease prevention, research and treatment is minimal. Compare the $25 million in Federal funding for Lyme disease to the $42 million in spending for West Nile virus. West Nile is a terrible illness. However, when you compare its 662 total cases in the United States to the more than 300,000 people who contract Lyme disease in the U.S. every year, it’s clear that our health and safety doesn’t seem to be much of a priority.

you-dont-look-sick

The second time I was told I didn’t look sick was ten months later. The cause of the infection continued to elude the top doctors in Illinois, and I was left with no viable treatment options. For a while, I’d been seeing a therapist, who specialized in health issues, to help me cope with the crippling anxiety of being undiagnosed. After working with an integrative medicine doctor and doing research on my own, I suspected Lyme disease. I explained my suspicions to my therapist and she said, “People with Lyme disease are really sick.” I wondered what impression I’d been giving her. I knew I felt really sick; apparently I still didn’t look it.

It turns out it was Lyme disease and multiple co-infections. Once I had a name for it, I thought everything would be different. I thought doctors would finally take me seriously, no matter what I looked like. Then, I started learning more and more about the controversy behind chronic Lyme disease diagnosis and treatment. I knew what I had, but no one in the medical community would give me any validation.

The third time I was told I didn’t look sick was more recent. I was back in the hospital awaiting a third biopsy on my spine, and a young resident told me, “You are the healthiest person we’ve seen all day.” I felt like she was looking right through me.

I didn’t go to medical school, so I don’t know how doctors are taught to analyze physical appearance, but I know enough people with chronic health conditions to know you can’t always see the chaos that is happening inside the body. At a time when chronic and invisible illnesses are being diagnosed at epidemic rates, we might want to stop looking at outside appearance to determine how sick someone is or how much help they may need. It seems like a dangerous way to assess and diagnose, which may lead to missing something or minimizing a serious issue.

The misconceptions aren’t limited to the doctor’s office. At times, family and friends disregard Lyme patients, because they can’t see our pain or fatigue. It’s human nature to judge a person’s health based on appearance. If you look fine, you must be fine, right? We are expected to work, do chores, be social, and help out just like anyone else. Things you would never ask of someone in a full body cast or with a gaping wound. For that reason, we have to constantly come up with excuses as to why we can’t do something, and feel the need to justify what we have is real.

Like Oprah said, we all want validation.

What is the cost of telling someone, “You don’t look sick”? It’s not what you say, it’s what the person hears. Every time someone said those words to me, I heard, “I don’t hear you, I don’t see you, and what you say doesn’t mean anything to me.” And that is what truly makes people feel invisible.

#MyLymeLife


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.