Maddy Meets Lyme

I could be in a room full of people, but still feel alone. I’m trapped inside my head. While I may have made it to the event, the pain is still there, and it’s the only thing on which I can focus. There are brief moments I pop into the conversation, to the people surrounding me, but as quickly as they come, they vanish. There is a barrier between me and everyone else. I don’t see what is happening in front of me, as my eyes lose focus and my gaze falls on the far wall.

Then there are times I don’t even make it to the event. Either my body won’t let me or the task of being a ghost-like presence is too daunting. In these moments, I initially feel great relief, knowing I won’t be making myself worse by trying to keep up with everyone else. However, the relief usually fades away, and is replaced by a fear that I am missing the opportunity to fully engage with my life.

Isolation is a necessary element of chronic illness. Our bodies don’t function at a high enough capacity to participate in all the joyful moments life has to offer. That reality hurts. It takes a toll. Today is World Mental Health Day, and in honor of this important day, I need to take a moment to recognize the effect this type of isolation has on an individual’s mental health. Not being able to attend and fully partake in activities with your peers creates a divide. Your friends stop reaching out because you cancel too often or you just don’t seem fun anymore. Fostering connection becomes incredibly challenging and can often lead to anxiety and depression. Individuals struggle to strengthen relationships and form new ones, as opportunities to spend quality time with friends and meet new people pass you. If you are a friend of someone with an illness, I implore you to continue reaching out. It always feels nice to be asked, and a canceled plan is not reflective of their desire to attend.

Thankfully, I’ve healed enough that these moments no longer happen very often. It’s liberating to enter events with a mind no longer occupied by pain. I’m moving in the right direction, but there are still moments I need to choose rest, and the memories of isolation are still fresh.

In the past, I’ve forced myself to go to events, expecting that once I get there, I’ll feel better. It’s a lie I’ve told myself a lot. I think we all know this lie because we don’t want to watch our lives from the couch. There seems to be this cycle of attempting to break isolation and then recognizing, even surrounded by others, we can feel alone.

What do we do in these moments of isolation, whether we are in a crowded room or alone on the couch? I believe finding a balance between pushing ourselves and recognizing that fully engaging with our lives looks different than our peers is a crucial step. Admit it, there are times (while they may be few and far between) you dragged yourself out of bed, plastered on a smile, and slowly realized, you were actually enjoying the event! These moments are why we keep trying. Giving up isn’t in the vocabulary of people with chronic illness. If it was, we would live a miserable existence. However, we know too well the toll pushing ourselves takes on our bodies and minds. Shifting our perspectives from “if I don’t go, I’m not fully embracing my life” to “fully embracing my life does not look the same as others because my body is only meant to take so much” could be an excellent opportunity to take the pressure off ourselves. Instead of beating yourself up for missing another event, recognize that missing the event does not mean you are engaging less with life. Our lives look different in a lot of ways, and therefore, our engagement is different. Finding a healthy balance between this and “let’s go and give it a shot” has been liberating for me, and maybe it could help you or someone you love too! Always remember, your life is still full of meaning, even when you can’t show up. Happy World Mental Health Day!

advocacy appropriations Babesia Bartonella Chronic Fatigue Chronic Illness federal funding Invisible Illness Lyme Disease Medical research Mental Health Mental Illness Misdiagnosis Obsessive Compulsive Disorder tick-borne disease

It’s hard to know what to say when someone tells you they are sick and not going to get better anytime soon. It’s hard to know what to do when that person is in a lot of pain day after day. This challenge leads to lots of hurtful comments, and in those moments, it’s really hard to be the person with the chronic illness.

I believe a lot of the inappropriate comments people make towards those with invisible, chronic illnesses are a result of not knowing what to say or how to help. People want to fix the situation, but many times the resulting statements invalidate illnesses. As I believe these statements come from good intentions, I worked with the chronic illness community to understand the most hurtful comments they receive. Hopefully, this will bring attention to words you may not realize are hurtful. I also gathered helpful comments the community would love to hear. This way, everyone can communicate in line with their supportive intentions.

HURTFUL COMMENTS

• Yeah, I’m tired too.
  • When someone with chronic illness speaks about fatigue, it is not the same thing as being tired. A healthy person is tired when they are working hard, not getting enough sleep, or are super busy. Chronic illness fatigue is not cured by sleep, occurs even if they have been resting all week, and feels like a brick is tied to every cell.
• You look so good, so you must be feeling better!
  • It is very hard to live with an invisible illness because comments like these are made often. We look like the picture of health, but are crumbling on the inside. If we look good, it does not mean we feel good, and we probably don’t. This statement becomes invalidating to how we are feeling and often leads to others glossing over our pain.
• You need to stop being so lazy. You will feel better.
  • Trust me when I say, if we didn’t have to sleep for a majority of the day and spend weeks in bed, we wouldn’t. Those with chronic illness have goals and futures they are hoping to make realities, and the rest required to function at the most basic level hinders their ability to do that. We don’t want to be in bed either, and pushing ourselves usually lands us in bed for longer as a result.
• You are faking it./You are trying to get attention./It is all in your head.
  • No one would take 60 pills a day, drill a hole into their heart, put their lives on hold for decades if the pain was not real. We get comments like this from disapproving doctors, and receiving them from friends and family alienates us from our communities.
• You must not be trying hard enough! Have you tried exercise?
  • Chronic illness patients spend their limited energy researching cures and driving between pharmacies, new doctors, and treatment centers. Whatever you believe will help them, they have already heard of or tried themselves. Exercise, yoga, and meditation are excellent supplemental treatments and many of us use them on a daily basis. However, our illnesses are so complex these exercises will not cure them. This statement comes across as not trusting the medical advice for which we have searched long and hard.
• You were feeling fine a few hours ago!
  • One of the most frustrating parts of chronic illness is the fluctuation of symptoms. Feeling well one minute or one day does not mean we are cured and can resume a full and active life. Sometimes, we even get tripped up by this trap, and we do way too much. This usually leads to a relapse and flare of symptoms, which puts us in worse shape than before. Allow someone to tell you how they are feeling in the moment. Be respectful when someone needs to take a break.
• You’re too young for all of these problems.
  • I think everyone with chronic illness wishes there was an age limit. A height bar similar to amusement parks. It would save a lot of childhoods because it is really difficult to be young and sick. Other kids do not understand and we end up spending more time in the doctor’s offices than on the playground. It forces us to grow up too fast. Making this comment negates that pain.
• You don’t look sick.
  • Try to think of a response to this statement. The only thing that comes to my mind is, “but I am.” You may think this is a compliment, but when someone standing in front of you feels like they are being stabbed on the inside, it is hurtful and dismissive.

HURTFUL COMMENTS ON WEIGHT

I want to make a separate section with hurtful/inappropriate comments about weight. This was the topic for which I received the most response, and it really troubled me. Weight is a sensitive topic, and it is commented on too frequently in our society. Worth is not defined by weight. Those with chronic illness are generally not in control of their weights due to medication side effects and the specific diets they must follow. Since my most recent flare, starting in 2017, my weight has fluctuated by 30 lbs, and I am not ashamed of it. My body works extremely hard to fight off parasites and Lyme bacteria. It is alright if my weight needs to go up and down to do that. You never know the battle someone is fighting under the surface, so watch your words in regards to weight because they can be incredibly damaging. All of the comments below are inappropriate and hurtful to those with chronic illness and those in general.

1. At least you look good, I wish I could be that skinny.
2. Commenting on required diets: “Do you just eat grass?”
3. Your face seems a lot fuller.
4. Eat a burger, you need to gain some weight.
5. Wow, you look different!
6. You’ve lost weight, you look great!

Helpful Comments!

Having chronic illness constantly makes us feel like we are not enough, as our lives are an endless journey to “fix” ourselves. It’s exhausting. Below is a list of comments that will help those struggling feel supported and accepted. Keep these in mind when speaking to those with chronic illness.

1. Is there anything I can do to support you?
2. What helps you feel better?
3. I can’t imagine my body feeling like that!
4. I am so glad you asked for help.
5. You are not a burden. You still have value.
6. I know you are doing your best, and that is enough.
7. What do you need from me as a friend right now?
8. I’ve never heard of that, but I’ll do some research.
9. I’ve noticed you’ve been quite/sleeping a lot/distant, how can I help?
10. That sounds really challenging.

Thank you for taking the time to better understand those with chronic illness. There are significantly more of us than you think, and the numbers will continue to rise. I hope reading gave you more opportunities to align your words with your intentions. Please share this with friends and family, so we can create more understanding communities!

---

Sign up to learn more about chronic illness and how to support those in your life!

I’m going to collapse from the weight of my bones.

Pushing my body so hard the floor groans

I’m going to collapse from the frenzy in my mind

My thoughts hijacking my soul every time

The frustration, the emotion, the pain continue to climb

and finally, I fall

I would cry but I feel so disconnected from it all

No tears come, so I lay on the floor

The light at the end of the tunnel is not there anymore

I call this healing fatigue, call it what you may

But at one time or another everyone has felt this way

When the illness stubbornly won’t break away

After medications and therapies fail to relieve

the pain in our core that others won’t believe

Getting up seems impossible

you are glued to the floor

Your hope rapidly moving towards the door

But then you get up as the moment has passed

I must carry on because that’s what is asked

Original Poem

My heart shatters knowing this type of breakdown is a common occurrence for those with chronic illness. Day after day the pain and frustration compound, and the body needs to rid itself of this suffering. It is natural. Instead of a breakdown, I call it a release. However, there is a lot of shame felt in these moments because we feel as if we should be dealing with our illnesses better. Some of us have had them for decades, shouldn’t we have our emotions in check by now?

Frankly, no. We have established coping strategies, but they don’t make the pain less real. It is still there, every day. Let’s eliminate the shame. We all have a 100% success rate of getting through these moments and carrying on to create joy in our lives. Shame occurs often when we feel alone, as if no one in our situation has ever had a similar breakdown. This could not be further from the truth. Even those without chronic illness feel the weight of the world and need a breakdown every now and then. It is healthy for all of us.

I asked people with illness about their thoughts when they “break.” Here is a video of their answers. You are not alone and releasing your pain is nothing to be ashamed of.

View this post on Instagram

A post shared by Maddy | Healing Blog (@maddymeetslyme)

Scroll to the bottom of the page to subscribe to the blog and learn more about Lyme Disease and Chronic Illness!

It has taken me a few days to think through how I wanted to respond to this situation because truly, all I wanted to do when I first learned of the incident was scream.

For those who don’t know, the WNBA is restarting their season this month, and to combat the spread of COVID-19, the League is conducting all practices and games at the IMG Academy in Florida. In addition, all players, coaches and staff will live within the “bubble” of the Academy for the duration of the season. This is an excellent opportunity for a growing fan base to continue to watch their favorite teams, but it comes with a risk to players. While precautions are being taken, the WNBA cannot promise players that COVID will not enter the bubble and spread. Due to this, players were given the opportunity to opt-out of the season (and their salaries) if they were not granted a medical waiver by an independent panel of doctors. If a medical waiver was ruled appropriate, the player would not play, but would still receive their salary. This opportunity aims to keep compromised individuals safe from developing severe COVID-19 symptoms.

Elena Delle Donne is a highly decorated player and gold medalist. Last season, she competed in the finals with three herniated discs in her back, and was awarded the MVP of the League. She is also someone who has suffered from severe Lyme Disease for the last nine years. The doctor who treats her for the condition has advised her not to enter the bubble and join the season because her form of Lyme Disease puts her at a significant risk for COVID-19 complications. After submitting all of her lab work and medical records required by the WNBA, as well as a note from her doctor outlining her need for a medical exemption, the WNBA doctor panel ruled her ineligible. By doing so, they are sending a message: Lyme Disease is not serious enough. It is not worthy. Delle Donne is exaggerating her health condition.

In fact, hundreds of people responded using these exact words. Lambasting Delle Donne for making up a condition that does not exist in order to get out of work. To be able to collect her salary without lifting a finger. They said Lyme is “not that bad” and told her to “toughen up.”

Unfortunately, this is not a new reaction. People who live with Late-Stage Lyme Disease are commonly told this by family, friends, and even the doctors from whom they are asking for help. I’ve been told this. I know that some people look at me as if I should “toughen up” and recognize that my pain is “all in my head.” The hurt this causes Lyme sufferers is immense. It leads to lack of treatment options and pushes thousands to live in debilitating pain everyday without hope. It kills people. Every demeaning comment adds to the narrative that Lyme Disease is not really that bad. It keeps research from being conducted to find cures.

I’ve seen the damage this situation has done to those suffering from Lyme Disease and those who love and care for someone suffering. In an effort to advocate for my Lyme Disease community, I have decided to share some research-backed information that can help educate those who have made such comments or had similar thoughts.

First, yes, Lyme Disease is sometimes not debilitating and can be cured using Doxycycline in 2-4 weeks. This is everyone’s best cases scenario. However, the medical community has perpetuated the idea that this is the only scenario. Instead, in the last five years, new research has identified the cause of recurrent and persistent symptoms in patients after this recommended antibiotic. The simplest answer lies in the persister forms of the spirochete bacteria that causes Lyme Disease, Borrelia burgdorferi. Put simply, the bacteria changes form. It begins looking like a corkscrew and morphs into a round body, coating itself in a biofilm that helps it evade the immune system. So yes, Doxycycline will kill almost all of the initial corkscrew bacteria, but it is not strong enough to touch the persister round bodies. This is what is meant by the term chronic infection, and this phenomenon is seen in many other infections that are considered chronic in nature. The bacteria remain in the body and burrow into all tissues. This includes all organs, including the brain. Evidence now shows that multiple rounds of different antibiotics are needed to rid the body of all the bacteria, and in many cases, a combination of supplements and antibiotics on a consistent basis.

If a Lyme patient is lucky enough to get their disease to a manageable condition, they still need to supplement their immune system because it remains compromised from fighting this persistent bacteria. The bacteria destroys the immune system and depletes its ability to fight. This is why it is common for a cold to cause the recurrence of intense Lyme Disease symptoms. The body never stops. The fighting never stops. It’s everyday when we wake up to when we hit the pillow at night. It’s fatigue that feels as if each cell in your body is carrying its own backpack of bricks; it’s a fog so heavy that you can’t remember what you did three hours before; it’s headaches and migraines that are always present; it’s pain in your joints and muscles that feels as if someone left a knife in your knee; it’s panic attacks that occur as the bacteria crosses the barrier between the blood and the brain and begin to burrow.

It is why Delle Donne needed a medical waiver.

Some may wonder why a majority of the medical community does not recognize these persistent symptom-causing bacteria. The answer is long and complicated, but it boils down to the lack of answers in how to treat such a condition as well as the expense of treating it. Insurance companies do not pay for treatments for the severe form of Lyme Disease. It’s incredibly expensive because the lack of research means a lot of trial and error is required. This is an unfortunate reality because many patients are unable to afford the out-of-pocket expenses to seek out doctors who have been treating Lyme Disease their entire careers and thus, have a thorough understanding of its persistent nature. I will never forget how grateful I was when a new doctor I went to informed me that he used to believe only 4 weeks of Doxycycline was required, but in light of more research, he has shifted his perspective. He said he must look at the evidence.

The evidence shows that due to Lyme Disease’s effect on the immune system, extra precautions are required for Lyme patients during this pandemic. The evidence shows that Elena Delle Donne should have been provided a waiver for this season.

“Why Persister Cells Matter with Lyme Disease”

Thank you for taking the time to read this and understand more about the severity of Lyme Disease. Please feel free to share this with anyone who would benefit from the information. I’ve attached a few links to research I referenced. Scroll to the bottom of the page to subscribe to the blog for more information on Lyme Disease!

Research on the growth of persister cells in cultures of B. burgdorferi

The John Hopkins Lyme Disease Research Center

Global Lyme Alliance

Frustration. That’s the emotion I find myself coming back to recently. Frustrated I can’t study for longer than three hours without the next day being a flare. Frustrated when I wake up and immediately know studying is not in the cards at all. Frustrated that I can’t seem to fall asleep no matter how tired I am. Frustrated that everyday seems to bring a new battle. Frustrated, when all I want to do is rest.

I started studying for the LSAT in April and it has been a long couple of months. While it has been hard, it came at a fairly opportune time. The pandemic means that I am not distracted, and I don’t feel pressure to fill my day with the social obligations of a “healthy” person. Instead, I can structure my entire day around studying. I can wake up late, study for an hour, and take a nap if needed, and be in a better position to study that night. It’s a silver lining. I also feel endless gratitude that I am functioning well enough to even consider taking this exam because there was a time when it would have been out of the question.

But recently, its been a struggle. The LSAT is a demanding test that is broken into 35 minute increments, and every second of that time requires 100% focus. I definitely do not have that. I am able to get through a handful of questions, but then my brain will freeze, and I am stuck rereading a section four times before I absorb any of it. I’ve had to find ways to limit those lapses and work faster in other parts of the test to make up for them. Similarly, I get fatigued incredibly easily, so by the time one of the sections is over, I am ready to lie down and doing another is a daunting task. Thankfully, the test is now being administered online for the month of July because of the Coronavirus. This means there are three sections instead of five. If there were five, I’m not sure I would be able to get through it.

Pushing my brain this hard on a daily basis leaves me spent. All the energy is sucked out of me. My body feels like it going to collapse in on itself. The weight in each of my muscles seems too much. I am sure this frustration is common among those with chronic illness when studying for college or graduate entrance exams, so here are 5 tips I’ve picked up these past months:

1. Spread out studying as much as possible
   • If you, like me, need to study everyday, then listen to your body. Split your study blocks in half and plan to take naps in between.
2. Make a schedule, but prepare not to stick to it
   • I make a schedule at the beginning of every week. Writing out what I need to get done each day make the process seem more manageable. However, with chronic illness, everyday is an adventure you didn’t sign up for, so I understand tasks will be shuffled around throughout the week. I’m becoming more okay with that.
3. Set intermediate goals
   • If you are a perfectionist like me, and you similarly have a Eugene telling you that your score needs to be prefect from the minute you start studying, breathe! Set intermediate goals that are actually achievable, this will help quite your inner-Eugene and give you a taste of success and fulfillment.
4. Remember that your health is more important than your score
   • The test is not worth the deterioration of your health. You fight too hard for it. Prioritize taking your medication, working on detox therapies, and eating + drinking enough. The strength I get on a good day brings me hope to push through the really bad days. It makes me feel light. Those days will not come without prioritizing my health.
5. Give yourself grace
   • There is no doubt that it is hard. It’s harder than it should be, and some days I find it helpful to be frustrated, to cry about it. However, one skill I’ve acquired from living a life of chronic illness is adaptability. We are incredible at adapting circumstances to better suit our health. We can adapt to studying for these tests too!

As always, be kind to yourself and others! Scroll to the bottom of the page to subscribe to the blog for more information on Lyme Disease!

Until November 2019, I had no idea what it felt like to wake up and not feel more tired than when you went to bed. In fact, I didn’t know I was supposed to feel refreshed. After 21 years, I finally got some relief after starting a new supplement and finishing my IV Vancomycin. I felt this weight lift off my body, and my mornings became much more manageable. This was also a mental win for me because until that time, I was constantly doubting myself.

I didn’t wake up one morning and suddenly get sick. We believe I’ve had Lyme since I was 10 years old, and so I grew up for another 10 years thinking that the intermittent stabbing pains across my body, headaches, anxiety, and fatigue were just part of everyday life. After being diagnosed with Lyme in 2018, I was shocked when I looked at the symptom checklist. I kept turning to my mom and asking, “This isn’t normal?” This made it incredibly difficult to judge how medications and treatment protocols were working. I had no reference of feeling well to compare my current state. I didn’t know how much better I could get, I should get. To be honest, I’m still not quite sure. This led to me constantly doubting whether everyone was as tired as I was, and if I should stop doing treatment. When should I say this life is good enough?

The months of November and December of 2019 gave me the perspective I needed. I no longer woke up with a crushing fatigue that crashed down the moment my eyelids flickered with the morning sun. My first thought was not how I needed to arrange my day to take a nap. It wasn’t how early I could go to bed that night. I no longer needed naps. I could function on a semi-normal level. It was bliss. And now its gone. It was almost like a tease. While I’m grateful for those times, I now know exactly the kind of life I’m missing. I was blind to that kind of life before. It seems everyday with chronic illness brings another paradox in which my brain can get lost doing somersaults. And its exhausting.

So what do I mean when I say fatigue? How is it different from just being tired because you had a long day? When I’m tired, I still feel light. I still feel as if lifting my arm to grab my phone won’t require effort. Fatigue feels like each of my cells is carrying its own backpack of bricks. Mentally, my brain has no extra energy to come up with something to add during a conversation, and I just want to sit down. All the time. Being fatigued means constantly modifying your environment for a place to sit. Can I push through? Most of the time, but that just means my fatigue will be the only thing consuming my headspace. Usually, this leads to a weekend where I crash. That’s when you won’t find me outside my room much for 48 hours. But I can tell you that I don’t feel any better when Monday morning rolls around.

In addition to the fatigue that is central to my illnesses, the extra research, medication sorting, doctors appointments, and general mental energy required to fight adds to my exhaustion. That is a full time job in and of itself. Don’t let anyone tell you differently. If you can relate to some of these feelings, know that just getting out of bed in the morning and doing what you need to survive to the next day is enough. In fact, its more than enough. I still need to remind myself of that sometimes. One thing I try to think about is making a list of things that I’ve accomplished that day. On my worst days, it may not be a list that others would be proud of; but showering, eating three meals, changing my clothes, and trying to do some work is sometimes an accomplishment for me. Viewing those things as valuable because of the energy I know it takes to complete them helps me stay more positive. Give it a try sometime! Scroll to the bottom of the page to subscribe to the blog for more information on Lyme Disease!