Burning Jack O'Lantern on a rustic table with autumn decorations, darkly lit.

Celebrating Halloween the Spoonie Way


Holidays can be extra hard for those of us with chronic illnesses. Expectations can hit head-on with reality and cause negative memories for the next year to come. We may not be able to attend all events we want to, eat foods that are traditional, or socialize without anxiety. This creates even more room for feelings of isolation and estrangement from society, peers and family. By using the spoon theory, we spoonies can plan ahead of time on how to balance activity and rest. Being able to choose what we do is a liberty not all spoonies have, so preparing for a holiday will allow some ease and excitement.

Halloween is my all-time favorite holiday, and Lyme disease won’t stop me from celebrating this year. I may not be going out to a huge dress-up party, drinking all night and dancing because that is no longer a part of my reality. My priorities have changed now, and I’m looking forward to different, new traditions. And of course, staying in the spooky spirit!

Decorating is my personal favorite. Pinterest is full of do-it-yourself crafts, and some are quite minimal and use a few materials. I cut spider webs out of black trash bags to hang in my window. Collecting leaves from a special walk and then pasting them to small mason jars make beautiful candle holders. Spray painting mason jar lids orange and tying them together in a circle creates a pumpkin, and a few cinnamon sticks in the middle smell delicious. Pumpkins and gourds can be painted, drawn on, carved into, and are great for stickers. Let your creativity guide you! Your home will feel cozier and you will have made something with your own two hands. Save these special decorations for next year, as a reminder how far you have come.

Candy is quite the bummer for people with chronic illness because sugar may not be allowed in our diets, and could cause a flare-up of symptoms. But candy is delicious and we should not go without. Using natural sweeteners like honey and maple syrup in baking can open a lot of doors dessert-wise. Again, I find a lot of paleo-inspired dessert recipes on Pinterest. I bought “Pumpkin Pie Spice” from a grocery store, which is just a mix of cinnamon, cloves, ginger and nutmeg. I put some in my hot ginger tea now, with a spoonful of honey. Tastes incredible and really helps my digestion. It’s fun to experiment in the kitchen and enjoy the process at a pace that’s comfortable for you.

Halloween movies are classic! And we spoonies are no stranger to the couch. So invite your friends over, or that special someone to hold tight, and get your fright on! You can stream these movies on Netflix now: “Sleepy Hollow,” “The Addams Family,” “The Twilight Zone,” “Corpse Bride,” “Practical Magic,” “American Horror Story,” “The Amityville Horror,” and an original series, “Stranger Things,” which will spook you to the core!

And on Halloween, my big plans are to wear a freaky mask, scare youths, and pass out candy like a good adult neighbor should. I can’t wait to watch all the families enjoy their holiday and see the kids in their the adorable and interesting costumes. I imagine the smoky scent of nearby fire pits. The coolness sweeping in after 6 p.m., as the sun goes down. I’ll leave my lights on for the latecomers. On Halloween, magic is in the air. I am limited in my abilities but unlimited in my choice to enjoy what I can of my favorite holiday.

RELATED VIDEOS

Living painting - young woman completely covered with thick paint

The Rejection of Chronic Illness


I’ve never experienced so much rejection so quickly and so deeply since my chronic Lyme diagnosis. That word really isn’t in my repertoire, but this therapist said to me last week, “Why do you feel there is so much rejection around you, Genevieve?” It confused me because I thought by discussing my symptoms and how hard Lyme has changed my life, it would be obvious. This was our first session, and he ended it by rejecting me as a patient because of his inability to handle my medical situation.

*Insert eye roll here*

So I dismissed everything else he said, but this word stuck with me. Rejection. Do I weave that sentiment into conversations without meaning to? Am I walking around like a big, grey rejection cloud? How can I fix this?

The answer is clear: nothing! Rejection is the name of the game with Lyme disease. You may face wall after wall, you may feel the never-ending pit of loneliness and despair while you experience the worst pain imaginable. Doctors may refuse service (so far a rheumatologist, many ER doctors, and oh yeah that therapist…). Insurance companies may refuse coverage or treatment. People may refuse your disease even exists. Loved ones may refuse to support you. Navigating rejection is how we get by. You say no. I say let’s keep on finding another way.

When I was diagnosed I was naive. I had expectations that people would rally behind me, come spend real time with me, that my social life wouldn’t change much. I would be sick, but then I would get better, and basically everything would stay the same. When that reality quickly became an absolute fantasy, I couldn’t comprehend why. Why aren’t the people who say love me here for me? Why can’t they call or text, send a card or carrier pigeon? Why am I lying on my couch so alone, afraid, and rejected?

​I may differ than the average woman my age (30). I have had more close encounters with death, losing loved ones, cancer, suicide, and drug overdoses than I’d ever want to. I just lost a beautiful friend, 26 years old, to cancer a week before my diagnosis. Overdoses are tragically common where I am from, so from young age I already had many different experiences that formed my reactions and responses to a sudden death or severe illness. I was raised to respect these things and to really show up for the people struggling, as much as I can. My beautiful aunt passed from cancer, and I was lucky enough to visit for a weekend once a month. I got to be there a day before she passed in her home with her loved ones. Cancer is scary shit, downright terrifying. I couldn’t go alone the first time, but it became normal after a while. No matter what, I kept showing up and will keep those days and lessons close to my heart forever. When a great friend of mine was hit by a drunk driver and paralyzed from the waist down, I made the cross-country trip to be with him. He had given me so much when we lived in Hawaii together. He was such a gift in hard times for me back then. Seeing this beautiful, tall man now sitting in a wheelchair was rough. But it became normal fast. We traveled, laughed, lived. I worked with him to develop a personalized yoga class for him to do at home, and it showed my true calling. Supporting bodies with movement, breath and passion to heal. That trip helped me choose to go back to school for occupational therapy and dive deeper into my yoga teachings. But this is me.

So when I think of the mountain of rejection we face as Lyme Warriors on a daily basis, I’m not jaded. I’m more prepared, still hurt but ready to problem-solve. I try to not take it personally, but I’m not perfect. I try to let go of the guilt, embarrassment, and shame. To identify what I can and cannot control. To judge others less. To stop repeating thoughts of self-doubt, abandonment, isolation. To only surround myself with people who do truly love me. To grow in that garden of self-love, community, and aspirations.

I don’t know if I will ever get used to flat out rejection, but I am ready to accept my reality and what comes with it. There is nothing I can do to stop people from rejecting me. Their mind is usually made up before I have a chance. It is not my fault I have a disease, limitations and a full time job to self-care. (I have to repeat this one a lot). Discrimination is a nasty taste in the mouth, but it fuels my hunger to thrive. My fight to survive.

There is a lesson taught from one of my teachers in occupational therapy about how to reference a sick person. As OTs we were to phrase it as “a person who has Lyme disease” instead of “this Lyme-diseased person.: The separation of person and disease is so important, and I never knew how much until now.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock – LiudmylaSupynska

half of woman's face with blue and purple hair

When I Realize What I've Lost Because of Lyme Disease


This is the worst part of day — that time between being faraway in dreams and being awake and distracted by work, when the reality of all that is happening and has happened sets in.

It’s when you hear people passing outside your window — teenage girls on their way to school, shoes slapping against the concrete as runners rush by, older ladies laughing as they power walk wherever they’re power walking to. I wonder if they have a destination. A part of me thinks you should always have a destination.

It’s when you hear the outside life slipping through the cracks beneath the door that you realize how lonely you are within, how, though you have so much and are forever grateful and truly blessed to not have had to sacrifice much for this illness, you realize what you’re missing. You realize what you’ve lost.

You realize you’ve lost yourself.

Because who are you without this illness? It heightens everything, its symptoms ranging from physical to neuropsychiatric, and it all seems to be a part of you now. It’s been a part of you for most of your life, only you didn’t know it, so where does the illness — these symptoms that affect your very personality — end and where do you begin?

The way you look at the world, the way you interact with it — is it all due to this disease enhancing a penchant for reflection and solitude, manifesting itself in a withdrawal from the world? Does how deeply you feel, the senses and empathic nature and vicariousness that comes so easily come at all because of heightened sensitivity?

I feel like half a person, a bit broken and weary after spending each day fighting: fighting for your health, fighting for your livelihood, fighting for some peace of mind and a break from the fighting.

Because when every thought can trigger an episode of a Lyme-induced emotional reaction, when every decision has its consequence for how fast you can relapse, when every action has its limits, it takes all your willpower, all your strength, and all your control to focus on the present, to try to be a part of the world when you feel so separated by it, when just living is hard enough, when just being becomes surviving.

I don’t know what’s real anymore. Or maybe I do — I know that what’s important is real: my family and friends and the love and support I receive from them. But there are days when I can’t reconcile who I am on the outside with who I am inside. This. This is real, right here — this bare-my-soul emotion. And the feelings of contentment are real and the happiness for others and sometimes even the courage to get through the day. Everything I’m able to write and express is real because it’s internalized, projected outwards. But outside of myself, that person you show to others when you’re around others and not protected by a barrier screen, I can’t be sure.

When I’m at work, I have to quiet the pain and control my thoughts for fear of slipping back into a darkness where desperation sings, to distract myself from this suffering and uncertainty of a future. When I’m with friends, though I try to relax and be who I am inside — that real Susan, that easygoing, jubilant, lover-of-life, carefree Susan — I still feel so guarded, like I have to protect myself, like anything can hurt me and if I hurt any more, I don’t know how I’ll come back from that.

I’m in survivor mode. All the time. And I don’t know how to lay down that weight. I don’t know how to let go of this, of the one thing I’ve been so desperately trying to hold onto through all of this.

Myself.

Because I don’t know who that is right now, without this disease.

Because I don’t know how to let go and try to find out.

Because I don’t know what will happen once I do.

We want to hear your story. Become a Mighty contributor here.

woman in jean jacket walking on the beach

The Reality of Living With Chronic Lyme Disease


The Reality

My name is Tori Ashdown and it’s 4 a.m. on September 19, 2016. A normal kid my age would be more concerned over the fact she can’t sleep because she has class today. For me, it’s different. I am on the sideline of my life, watching everyone run this huge life marathon that means so much to me. I sit and watch them pass every single day, and the sideline is a dark and lonely place. I should be a junior at Wentworth Institute of Technology in Boston, Massachusetts studying interior design, my dream. Actually there are a lot of things I “should be” but cannot be because of this illness. For now, I lay awake and accept myself as I am. Not what I could be, but the human I am lucky enough to be now and the life I do have. The future will remain waiting for me.

December 6th, 2010

My life was flipped upside down overnight. On December 6, it will have been six years. Six years from when I woke up in the worst pain of my life and couldn’t lift my head off my pillow when I had been a normal, healthy freshman in high school the day before. It’ll be six years of a war battling inside me, six years of chronic pain, six years of living with a broken heart, six years of living with a constant migraine no medication in the world can make go away, but most of all it will be six years of living with Lyme disease. I am a Lyme warrior, and I am not ashamed. The color blue lately has been trying to make me feel ashamed. I am sick of looking at blue ice packs every time I reach for them in the freezer, and I am sick of going to bed every night with my blue ski hat, packed with my blue ice packs, with my blue cooler sitting next to my bed filled with more blue ice packs so I can change them throughout the night each time the pain wakes me.

The Pain

Living with chronic pain is not the ideal life, but I manage. When my muscles twist in my legs, the awful spasms feel like someone lit my legs on fire, sometimes preventing me from walking. My head will hurt so bad I will vomit and not leave a dark room for days. My bladder constantly hurts, and I find myself in the bathtub in the middle of the night more often than my bed. I wake up soaked from night sweats and laugh at myself when I tremor and cannot use my young hands to take a picture. I eat soup and Popsicles more than any other food because my throat constantly hurts and my glands and lymph nodes are always huge. The anxiety has to be one of the worst symptoms. Imagine the most immense fear you have ever felt in your life, then multiple that by 10. You become paranoid. Straight A’s – yeah, they used to be a thing for me. Now my memory and concentration is awful, and I am on an education plan when I am in school to help me succeed. The list goes on forever.

The Neglect

I shouldn’t be ashamed, but the bigwig doctors and world-renowned hospitals should be for allowing this to become such a huge hidden epidemic with no cure and all of this controversy over “chronic Lyme disease” being real. Yes, it is real. Insurance companies should be ashamed for denying our treatments and authorities that could have a say should be ashamed for letting this go on instead of speaking up for us. This is only an issue when someone “important” gets sick with Lyme – someone in the government, a celebrity, etc. Our pain is real, our scars are real, our aching hearts are human; we are real people too, living with a chronic illness every day with no cure and nowhere to go. It would be a dream if somebody called and said, “Come on in. I know how to help her. I can make it go away.” But that doesn’t happen. Instead, when I am at my worst – blood pressure nearly bottomed out, a raging fever, an erratic heart rate, the worst pain you could ever imagine, fighting for my life as I am hooked up to be stabilized – that is when the nightmare sets in.

The Heartbreaking Truth

Once I am stable, I wait. Hours on end for someone from the infectious disease department to come see me, to come help me, to come make me feel safe. Hours go by, and then the whole day. When they finally walk in I hold my breath, waiting to see what they have to say, hoping that maybe, just once, they will believe me. They will believe my pain is real, they will be highly educated in Lyme disease and maybe they will know what to do next. When they finally speak, I hear the words every Lyme disease patient fears. “Your pain is not real. You are psychosomatic and need to seek psychiatric help.”

I begin to cry but they don’t care, so my parents try and explain. “OK, so if it is not Lyme disease, what is it? Why can’t you help her?” They don’t listen. I have a label, and unfortunately it is a bad one to have in the medical field. I hope 10 years from now this label will not be frowned upon — it will be taken very seriously. I cannot even imagine the outbreaks that will eventually come out.

It would be a dream to have a doctor at a world-renowned hospital believe me and have a cure. Instead I seek medical help anywhere but the world-renowned hospitals and find the small hospitals in the middle of nowhere. This is where my Lyme disease specialist tries to help me, but my case is so complicated and he has so many sick patients that it is hard for him to know what to do. I have been a patient of his for almost five years. He has seen patients come in just as sick as me, and walk out a new person months later. Then there are the few patients like me, whose symptoms are just too complex. The Lyme disease is too far gone — spread throughout my organs, my muscles, my tissues, hibernating inside my body, eating me alive and shutting down one bodily system at a time. It is patients like me for whom there is just too little research, everything is too complex and the doctors just don’t know what to do. All they can do is try to better educate themselves and try and make me better.

We become our own advocates. Our parents dedicate their lives to us, researching, learning, educating themselves and slaving away to pay my medical bills. They have watched their little girl struggle for six years now. What else are they supposed to do but help try to save my life? I know I would do the same thing for my own kid, but watching them fight this disease with me has taken a toll on them and there’s nothing in the world that will change that.

Then and Now

For now, healthwise, I may still be that 15-year-old girl who pushed herself through high school and graduated on time, despite missing her whole sophomore year, instead learning from tutors who kindly came to her house. I may still be the girl not everyone can understand unless they have been there, felt my pain and walked in my shoes, but I would wish that upon no one. As my 21st birthday approaches and I sit on the sideline, I think about my label: “Lyme disease.” Yes, I have Lyme disease, but no, I am not embarrassed to admit so. I may not have the life I asked for, but I am making the best of it and sure am a hell of a lot stronger because of this battle. Remembering HOPE: “Hold On, Pain Ends,” I continue to fight on even though this disease has taken six years of my youth, years that should have been the prime of my life. I keep busy doing yoga when I can, teaching dance, dancing through my emotions, painting, writing, leaning on my friends and family and of course keep myself busy living as a Lyme disease warrior – now an advocate and enthusiast for those with Lyme disease who don’t have a voice.

I Am Not Ashamed

My name is Tori Ashdown and I have Lyme disease, but Lyme disease does not have me. I am not ashamed of my label, but this is the story of finding my destination as the healthy, young woman I need to be. This is me at four in the morning telling you a fragment of my six-year-long battle, having a voice for so many people that are sick with Lyme disease. Now that you know me, follow my story. Watch me speak up, watch me fight, watch me live in agony, watch me fight to find a cure with or without doctors. However, there is one thing I can promise you: you will not watch me give up – and that is a promise I intend to keep.

Until next time,

Tori Ashdown

A version of this post originally appeared on The Odyssey.

We want to hear your story. Become a Mighty contributor here.

People and solitude concept. Alone woman looking through window waiting back view indoor

A Window Into the Isolation of Lyme Disease and Chronic Invisible Illness


Isolation even sounds like a lonely word. To be isolated is to be set apart, to be alone. Lyme disease is an isolating illness. Like a deserted island in the middle of a vast ocean, Lyme patients are an island to themselves.

Facing the diagnosis of Lyme disease thrusts you into a frightening world. Setting you apart from mainstream medicine, the medical help that is so desperately needed is often unreachable. The common, flawed medical opinion sets the patient apart from understanding. Apart from sound medical advice. Apart from a clear path to wellness. Apart from any real hope.

This
 is Lyme disease. Living life in a proverbial box that has invisible bars preventing any means of real escape. The bars of chronic illness. A silent prison.

Solitude is something that I struggle with on a daily basis. Lyme disease has a way of forcing isolation upon you. You do not feel like participating in life in general. Most of the time just carrying on a normal conversation is exhausting. I am isolated not because I am physically alone, but because I do not have the energy and endurance to interact with my family and friends.

I spend many of my days in silence. Not because I do not have anything to say. I just simply do not have the energy to talk. I am often thought of as being a quiet person. My Lyme fatigue and pain have played a huge role in dictating this silence.

It is all I can do most days to put one foot in front of the other. To do the things that have to be done. Simple tasks to be sure, but necessary pieces of daily living. Things like going to appointments, taking care of my young children, doing the laundry and cooking simple meals.

Small talk takes too much energy. So, I rarely participate in surface chats. More often than not, I find myself completing certain tasks with tears running down my face. This is exhaustion, pure and simple. It is the voice that says, “I can’t go on.” I try to block out that voice quite often, instead choosing to listen to the voice that says, “I must go on.” To quit would be to give up entirely. I cannot afford to give up. My family depends upon me.

One of  my sons recently mentioned that my husband told him I used to be a vibrant person. That in past years I was very energetic and enjoyed life to the fullest. When I heard this, it made me terribly sad. Lyme has slowly taken away so many bits and pieces of my life. When I look back over the landscape of my life I can see the steady falling away of the things I used to love most in this world. The special “extras” in life that make living so colorful and worthwhile. Lyme is a thief. It takes and it takes, but it never gives back.

During a recent extended weekend I gained a new perspective of the isolation of my chronic illness. I spent several days with my extended church family. I was in a crowd of several hundred people for the better part of four days. Yet, I felt alone. Alone with my pain. Alone with my struggle to keep up. Alone with my thoughts. Alone with my fatigue. Alone with Lyme. Just alone! Though this was absolutely no one’s fault, it is the truth!

As I sat in this gathering, a place filled with much love, friendship and fellowship, I was not physically alone. I accepted many smiles, hugs and even an occasional kiss on the cheek. But, when it comes to the daily inward and physical struggles that go hand in hand with Lyme disease, these experiences are often accompanied by a very strong feeling of isolation.

During this particular weekend, I was approached by several friends. Each friend in turn told me how well I looked. One person in particular was not even aware that I struggle with Lyme disease. Upon learning this fact about my life, she commented that I always looked like I was doing so well! That I looked so put together and healthy. This is a common misperception that goes hand in hand with invisible illnesses.

This is the mask of chronic invisible illness. I put this mask on every time I go into a public place, to any social event. Even when I am just out running typical everyday errands with my family. I might look well on the outside; on the inside I am literally falling apart. I am a master at acting healthy.

The myriad of physical struggles that I face each and every day go unnoticed by virtually everyone around me. It is a silent epidemic that drains me of all necessary energy. It is my reality. So at the risk of sounding like a habitual complainer, here is a ticket to my inner struggles. A trip through my everyday realities. A window to my isolated world. A window looking into the struggles of chronic Lyme and chronic invisible illness.

  • No one sees my struggle to get out of bed every morning.
  • No one sees the constant muscle spasms in my arms, neck, shoulders, back and legs.
  • No one feels the deep toothache pain in my knuckles, toes, ankles, hips, knees, elbows, shoulders, and spine.
  • No one feels the constant tremors that wrack my insides. Most of the time, I feel like I’ve scarfed down five espressos in a matter of minutes.
  • No one hears the constant ringing in my ears. Think of cymbals being clashed right next to your ears and then dealing with the repercussions of that event all day long. Only there are no cymbals, the ringing is just there.
  • No one feels the constant migraine like headache in my temples and gripping the circumference of my head. Like heavy hands with an iron grip.
  • No one feels the buzzing, electrical-like jolts that travel around the base of my skull and up over the top of my head.
  • No one feels the side effects of the many supplements, tinctures and medicines that I take for my treatments.
  • No one feels the tightness in my chest and throat. (“Thank you bartonella,” said with extreme disdain.)
  • No one feels the squeezing, crushing pain of costochondritis in my chest.
  • No one feels that awful smothering feeling that stifles my breath. (“Thank you babesia,” said with much sarcasm.)
  • No one notices that my left foot drags slightly when I try to walk too fast.
  • No one feels the numbness of my toes and fingers. (Thank you Raynaud’s disease — not!)
  • No one feels the numbness over the left side of my face, remnants of Bell’s palsy from years before.
  • No one feels the nausea that is my constant companion.
  • No one feels the clenching pains in my stomach before, during and after every meal.
  • No one feels the fogginess and strange thought patterns that cloud my mind minute by minute.
  • No one realizes that my heart is beating over 100 beats per minute as I sit quietly listening to a speaker. (Thank you, tachycardia.)
  • No one knows that my blood pressure is often either way too low or extremely high. Often jumping between one extreme and to the other in a matter of seconds.
  • No one feels the faintness, the dizziness when I stand.
  • No one feels the tension and searing pain that builds in my lower back and shoots down my legs due to bulging discs.
  • No one sees the terrible ache in my neck from severe bone spurs and osteoarthritis.
  • No one feels the bone deep ache in my groin or the bulge near my hip joint.
  • No one feels the intense pain from the curvature in my middle spine.
  • No one feels the intense itching of my scalp due to psoriasis. Or the crawling feeling that creeps over my skin and makes me silently squirm with itchiness all day long.
  • No one sees the constant insomnia that accompanies me to bed each and every night.
  • No one can feel the crushing fatigue that demands I lay down. That makes every movement, every word I speak, every task I try to undertake a form of torture. Fatigue that insists I must go to bed right away. That insists I cannot go on.

No one sees or feels these struggles. I don’t expect them to! I rarely talk about them. These are simply the isolating sensations of every day life for me. They are inner struggles, inner sufferings. They are my “normal.” They are the many pieces of the puzzle that are Lyme disease.

Dealing with these symptoms on a daily basis is difficult at best within the confines of my own home. But, when I try to step outside of my small world and actually function and attend social gatherings, these symptoms escalate to mountainous proportions. When I try to engage in any kind of social activity, my life quickly becomes a nightmare. An extreme version of “A day in the life.” Like one of those terrible reality shows where drama lies around every corner. This is what it is like when I try to be a part of life. I pay for it. Plain and simple. I have to pay for it, every inch of it! Gone are the days of living spontaneously. Every activity must be calculated and planned for.

As isolating as it may seem, I have come to enjoy the peace and quiet of home. I manage best when I stay inside the small compartments of resting and quiet days. I literally live for the days when I can actually rest. The days when I do not have commitments. Those days are my version of heaven on earth. Days when I can let my constant guard down and just be. Days when I do not have to wear the “mask of wellness.” Days when it is OK to be sick.

Everything else outside of that small box is a struggle. This is what life is like with Lyme. You lose contact with friends. You lose contact with family because at the end of the day when the choice is presented between a phone call and a bed, you take the bed hands down every time. When you have that chance to meet for lunch or invite someone over for dinner, you cannot handle the consequences that go along with the commitment. You choose rest over socializing. This is chronic illness. This is chronic late stage Lyme.

On the flip side, while I do find being in a group isolating, due to the many silent struggles I face with my illness, I have learned that sometimes, I need to make the phone call. I need to reach out to others instead of  climbing into bed. I need to put my struggles on the back burner, if only for a moment. (Even though in reality I really can’t truly set them aside. They are chained to me whether I want them to be or not.) I can hand my worries to God and step out in faith. That is what I did during that recent weekend gathering.Even though it was very difficult and I will pay for it for quite a while. It was nice to be a part of the group in some small way. To be in the “crowd” so to speak. Lyme disease can feel very isolating at times, because so much of the struggle is silent and hidden from the human eye. It helps when you are surrounded by family, friends and fellowship. Even if they can’t see the inner struggle, they appreciate the effort I made to be there. Isolation is often a frame of mind. I just have to learn a balance in sharing bits of my struggle with others to help them understand my limitations.

Isolation in chronic illness is often unavoidable. It comes with the territory. I have accepted it. Even though I often worry about sharing too much, about being a burden to others, I can make all the difference by being willing to share my journey — by letting others into the small compartments of my life and then letting go and realizing that everyone has struggles. Yes, we are all different. But we are also all human beings. That is what brings us together and keeps the isolation at bay. We need each other in some small way. Like that familiar quote, “Friendship isn’t how much we talk. But instead, how much we are there for each other in times of need.”

young girl in a field of purple flowers, pink sunset

What I Remember When I See Lyme Disease Mentioned in the News


I would have never guessed the rush of adrenaline I would experience scrolling down my Twitter or Facebook feed and landing on a post about Lyme disease. Or the joy at the realization that there are many others like me out there. With so much in the news about Lyme disease these days, I find myself starting to remember certain things that I thought I had pushed back, way back into the deepest parts of my mind.

I have always been a simple person, seeking a pretty simple life. I never thought my extraordinary health symptoms would lead me down a rabbit hole of epic proportions. My journey started the summer of 2001 and until that point, I was completely healthy. After that point, strange and inexplicable things started happening which over 30 doctors could not figure out. Like Yolanda Hadid, Thalia, Avril Lavigne and most recently Bella Hadid, I knew something was very wrong. However, every single doctor and specialist, even the Mayo Clinic, said I was just fine.

Fast forward to the summer of 2006 when I go to see one of the best Lyme-literate doctors on the East Coast. On that day, he would present me with the diagnosis I knew I had all along. I had Lyme disease and I felt I had hit the jackpot because a clinical diagnosis would be made, despite my negative blood test. (According to the International Lyme and Associated Diseases Society (ILADS), the tests are not always reliable to make a definitive diagnosis of Lyme.) And now it’s all coming back to me — I was in his office thinking how wonderful this was to finally have the problem figured out. If I now knew the problem, I could fix it! Little did I know, this was just the beginning of a long road.

You have to get worse before you get better… I remember feeling like surely I was dying three days after starting treatment. Just like remembering my exact location when the Twin Towers fell, I remember my exact position on the bed when he returned my call to say to me, “You are going to feel like you are dying, but trust me you will not.” So, the road ahead was long… I’ve had good years and bad years. Like many Lyme patients, they find something that works, until it doesn’t. 

The biggest hurdle besides the physical aliments is the toll it takes on you mentally. Also the toll with family and friends and relationships. Recently my daughter asked, “Mom, why can’t you just take something to not feel like that?” How do you explain the complex road of the Lymie to a child? How do you say you are sorry for all of the hours, days, weeks, and months you couldn’t participate in certain things or go on certain trips? The small daily disappointments turn into larger ones, i.e. missing your child’s parents weekend at college.

And so I have lost some really important time in this long journey, but I have gained far more. I have found a new passion in life in trying to spread awareness about this illness. More importantly, in finding just a few cherished people that do know your journey and how hard you are trying every day to make things manageable… it gives you hope. A seasoned Lymie knows how to appreciate the small, special, quiet gifts that are given to them. Sometimes in the most unbelievable and hardest times, we find the greatest gift in our relationships and the strength that was given to us to withstand this disease. And so whatever battle you might be fighting, I hope to remind you of that small gift that was given to you, too!

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.