Chronically Aware Series: "But You Look So Healthy?"

"You so look so good though?"

"You must be feeling better, your color is amazing!"

"You're sick, but you seem so active?"

All of the above quotes and many more are the hallmarks of living with an invisible illness. There is an overwhelming misconception in modern society that illness functions like a social media profile, clearly defined by your appearance and the very small snippet of your daily life that rest of the world is exposed to. This however is entirely inaccurate and damaging when applied in real life.

One of the most common grievances of the invisibly ill is constantly having to prove that you're sick, due to other's false perception of what that "should" look like. The idea of what it means to be chronically ill is far too often associated with stereotypes and based off of shallow observations, not real information.

It is viewed that if you are not visibly handicapped or outwardly showing signs of illness that you don't count as being sick and could not be possibly be disabled by said illness. Ageism is also a frequent point of ignorance for the invisibly ill. Youth is perceived as a sign of strength and good health, but is based entirely on your appearance.

An example of this in my life is when grocery shopping. Whenever I have a lot of items the bagger frequently overloads my bags causing them to be painfully heavy. This action is usually followed by the statement "You can handle heavy bags, right? You're young and strong!". In actually I'm quite sick and my youthful appearance hides a broken body- so much assumed simply based off of how I look.

It is incredibly disheartening to have all of daily struggles and pain overlooked and boiled down to nothing by a complete stranger. Age however is not as big factor as perceived good health.

Modern society is extremely short-sighted about what it means to be sick. We get it when someone has the fllu, has a broken bone, is visibly going through chemotherapy or requires a movement aide like a cane, walker or wheelchair. What is not easily accepted is when you cannot tell a person is suffering from a chronic illness or disease by appearance alone. Accusations of attetion-seeking and exaggeration are common. To make such assumptions about a person you don't know is unfair and condescending.

Just as appearance does not define how sick a person is neither does activity level. There are many factors, despite illness, that can lead to a person being unable to cease their day to day activities. For some it's parenting, being a caretaker for an elderly relative or being the breadwinner of the house, to name a few.

In my own life this is rendered impossible by our living situation. My spouse and I live alone and are without a vehicle. Transportation, public or otherwise, is not available 24/7 and doesn't go everywhere we need to go. The nearest grocery store is a 15 minute walk in optimum weather (below 70 degrees). All household chores are enirely on us to get done as well. We have no one to aide us with this, while also both being chronically ill.

To base the severity of our illnesses solely on appearance and how we conduct ourselves would be extremely presumptious and offensive, especially when such activities come with a heavy price-tag.

What the casual observer doesn't see is the amount of pain that occurs or the days afterward spent getting worse from doing things they take for granted. I affectionately refer to this phenomena as "Cashing an activity check when your energy bank has insufficient funds.". Just as in real banking this leads to an overdraft and can get you into big trouble. For some it's not a choice but to play this stressful game of debt and repeat, and if you don't know someone personally you won't ever see any of this. Think before you judge, whether a person is a stranger or family, it shouldn't matter!

This is not to say that the chronically ill don't want compliments on how we look or expect you to ask everyone "Are you sick?" before you pack our groceries. What we are asking is that you not make assumptions about our capabilities without knowing us and not to judge us based off those assumptions if we inform you of our situation or ask you for help.

Conversely while the chronically ill don't want to be overlooked based on your perception of the severity of our health issues, we also don't want the entirety of our lives defined by them once you do know. Our health status does not need to be the topic of every  conversation, is not our only interest or daily focus and we don't want or expect pity or sympathy everytime the topic is brought up. We are people who are sick, not an illness first and then a human being.

We live with our illnesses everyday and are well aware of our limitations and struggles. We also don't require you to explain to us how our illness works- we already know. We don't want special treatment, we just want to be treated like everyone else. A little bit of respect goes a long way!

Kenneth's Kickin' Lyme Fundraiser!

Hello everyone, I just wanted to let you know that I currently have a fundraiser going to help with the costs of my tick-borne disease treatment. 

My Lyme-literate doctor is 240 miles (round trip) from me & I have no car and cannot drive. As of January 2016 my monthly costs for my appointments including co-pay, travel meds/supplements will be around $300 on $800 a month living expenses!

I was infected between the ages of 6 to 8 and did not get diagnosed until I was 24. I was diagnosed with late-stage Lyme in 2010 and a year later with Bartonella, Babesia and Anaplasmosis at 25.

In total I have had 8 years of my life robbed from me.

I have been in treatment on and off for five years due to being limited in my choice of physicians because of insurance and not having a vehicle.

I am currently suffering from serious neurological complications from Lyme and Bartonella that are severely reducing my quality of life. I am also suffering from joint damage from Lyme, but cannot find a Lyme-literate rheumatologist.

I am seeing a very well known doctor for treatment but I'm on a very tight budget. Until January 2016 I have met my insurance deductible and the copay is less. As of the New Year the co-pay shoots up not including travel and meds/supplements.

This doctor requires monthly visits and $300 a month is over 1/4 of my monthly expenses. That includes basics and essentials, not luxuries! We don't by new stuff and have no substantial savings. It's literally a choice between getting better and everything else.

My goal is $5,000. That amount would help me pay for transportation costs, supplements and beneficial adjunct treatments not covered by insurance such as vitamin IV treatments, acupuncture, visiting a naturopath and neurofeedback sessions.

Go to Give Forward to make a donation.

Tick-Borne Disease Specialist, Update.

I had my first appointment with my new tick-borne disease specialist yesterday and and it was absolutely amazing. He was engaging and talkative, cracking jokes and treating us like people, not patients. His office was extremely thorough in gathering information from me and examined what my previous doctor and was not very happy. A lot of treatment routes were overlooked or ignored altogether. 

I've been placed on two antibiotics (I'm choosing to not share what ones) and left the office with hope in my heart that this is the doctor who will get me better. I was offered IV antibiotics, but we're waiting on doing that unless I fail all other options, simply due to logistics. 

My doctor is a 240 mile round trip from where I live so being monitored while on IV would be extremely difficult and in this case would alter insurance coverage. I am going to look into options near me (we have an infusion clinic near our house) and the financials to see what we can do. 

We have even discussed staying near my doctor on and off if we are able in order to do IV, when and if the time comes. People might disagree, but my thinking has always been it's not worth doing IV if I can only do it for a very short period. I want to be able to take advantage of my insurance paying for more than just a spark in the pan. 

I was told my insurance, if I was closer, would cover long term due to my doctor being able to administer my infusions and monitor me directly. Right now we are taking a multitasking approach that hits multiple infections, but he was very honest and told me that we may end up trying varied approaches over the next couple of months until we see noticeable results. 

He is not integrative (body, mind, spirit), but that's okay. My other doctor is and is very good, just not so much with advanced Lyme and co-infections. I'm also looking into to seeing a naturopath (combines the wisdom of nature and the rigors of science) to do holistic and herbal treatments. 

There is also an integrative practice right near where I live that offers primary care services. I am planning on moving to that office when I am able to. Other options that I am dipping my toes into are biofeedback and acupuncture to help augment my treatment. 

I will be starting my antibiotics today and will chronicle my journey as a go through treatment. Whether that be the good, the bad or the ugly, so that someone out there suffering from tick-borne illness can see that they are not alone and that there is hope.

I chose life.

Tomorrow afternoon I will be heading off to my first appointment with my new Lyme-literate doctor. I made my first call to his office in 2013 but due to various life circumstances I have had to reschedule multiple times.

This time it's real and I am set for a 2 o'clock appointment with that doctor, a past president of the International Lyme and Associated Diseases Society, defender of patient rights and reseacher. I am hoping to finally get somewhere after years of proper treatment being promised only to see it not come true.

Even just the act of setting up to see him has been life-altering as it set off a chain of events that has put me in an advantageous position for once!  Since July 2015 I have lost 40 pounds. Due to chronic illness and poor diet my blood sugar was high and in June my A1c was 7.1. It is now 5.9 and my average daily blood sugar is normal. This was achieved through a low carb, high healthy fat eating plan, high in fiber and as natural as possible.

Detoxing is also a daily thing as well. One of my liver enzymes I could never get below 40. It is now 29. I have also been doing some mental fall cleaning as well. I have finally begun to accept and confront my PTSD diagnosis. I also have put together a treatment protocol with my psychiatrist that will benefit me during tick-borne disease related treatment.

I have never had the strength to climb this far up the mountain, and while I am nowhere near the summit, I have crossed the line where I would have reverted back. It came to me viewing this as a life or death decision. Did I want to remain sick and unhappy, missing out on life in order to soothe my denial with unhealthy habits or did I want live, get better and regain my life?

I chose life. 

My husband, also sick with Lyme, made this possible as well. We jointly made the decision to change our habits and with both of us working towards a goal it was made much easier and attainable. We've had two years of hardship and through that have opened a new chapter. We can smell the greener grass on the other side, now it's time to climb the fence!

- KMH 10/04/15