It’s typical for Lyme patients to lose trust: in themselves, in their doctors, and ultimately, in the belief that there is anyone out there who actually knows how to cure Lyme Disease. Here’s a typical path to distrust we take:
One, In Ourselves
It’s not uncommon for diagnoses
of chronic illnesses to take months or even years. “What’s wrong with me?” is usually where the self-doubt begins. In that time, a lot of doctors try and succeed at convincing their patients that they are just depressed. If one doctor after another keep telling you “it’s all in your head,” you’re probably going to start wondering if you can trust your own ole’ self. Sadly, a lot of us are forced to ask ourselves, “Am I crazy?” before we finally get a diagnosis and sign of some sort that, no, we are not.
Two, In Our Doctors
Losing trust in the medical system tends to follow next. How can we trust the doctors that overlooked Lyme Disease as a possible reason for our years of suffering? Once we find doctors that are “Lyme literate,” some of us often feel like we’ve found a savior, later to realize their treatments cost of thousands without helping – and sometimes even harming us further. “Should I be herxing for this long?” is a question we might ask our doctors at this point, and if they say we should, then we might follow this question up with, “What if my doctor would rather me stay sick so that I keep buying antibiotics off of her/him?” Questioning doctors and medical institutions is basically a rite of passage in the Lyme community.
Three, In The Research
Ah, and then we begin our hunt for the truth. We buy the books, join the forums, and read about Lyme and diets and miracle cures until, finally, we come to the conclusion that nobody knows what they’re talking about. The information is convoluted. Every diet is backed by clear evidence as to why it is “the” diet for Lyme sufferers. Some people swear by treatments, and even if they do, we are left wondering if the results lasted. In the end, we don’t even trust the research.
Losing trust in yourself, your doctor and your research are all obstacles that can slow down your recovery process. I won’t argue that blind faith is the better alternative. Conversely, blind faith can make us hyper focus on one doctor or one treatment, and putting all your eggs in one basket is practically, emotionally and financially hazardous. “I won’t get better until I try ozone therapy,” “I can only get better if I quit my job and rest up,” or “When I eradicate the infection, I will never, ever, ever have to look back at this part of my life again,” are just some examples of things we tell ourselves that simplify Lyme and usually leave us disappointed later.
I think a middle ground, between prudence and faith, is a good place to be when coping with Lyme Disease. After years of failed leaps towards remission, I don’t think total distrust in ever getting better is at all helpful. Like an entrepreneur or an athlete, Lyme sufferers can expect to fail a few times, and can expect a ton of work ahead of them that they will need to do day in and day out for results. They may never succeed, but they definitely won’t if they don’t believe they can. Faith makes us keep trying. And even when we are at low to mediocre stages in our health progression, a simple faith in life, in existing, in God, in anything can make your day better. Faith just takes some of the weight off our shoulders so we can endure the marathon towards remission that much longer.
That said, prudence is a desirable alternative to distrust. I sometimes ask myself if I am recognizing my symptoms to be worse than they actually are – and at these times I can guarantee you that I am stressed out. Sometimes, I get control of my stress and my symptoms lessen. Other times, I get control of my stress but my symptoms remain, and this is when I need to trust myself and my body. I have been in denial about getting better a few times, and that has something to do with the trauma of being chronically ill.
Funny enough, I’ve also been in denial about relapsing! Being in remission for a long time, I start to feel like I’m on top of the world. If I’m a little tired for a few days at this point, I make excuses about the fatigue because I hate to admit that I have fallen a few steps back and need to put in the work that I’ve already put in one-too-many times before.
Being sick for many years now, I’ve learned how to differentiate my feelings of denial. It gets easier and easier to be honest with myself, and to be cautious without being distrusting of my own progress. Speaking to you as someone who has made many mistakes throughout my history with Lyme, this is a list of ways I’ve transitioned from distrust to prudence:
- I don’t pretend Lyme “was all a dream” as soon as I reach remission. I remind myself every day that I may not be cured, and that I need to continue living a healthy lifestyle.
- I’ve learned that the longer I’ve been in remission, the stronger I am and the more likely I stay in remission. This means that if I’ve been symptom-free for six months and I get a cold, I will be more hopeful that I won’t relapse than say, if I got a cold when I just started to feel like I was getting my health back.
- I ask myself “am I in denial about anything?” every day, and check in with my body. I don’t, however, stress about aches and pains, or visualize my insides deteriorating like I used to. The added stress never helps.
- I can react with fear and freak out about every sharp pain and short breath, or I can react with gratitude. I can give up so much time to fear, when meanwhile, gratitude can get me through my relapses quickly and with much more grace. There are moments to take action, go to the hospital and get help; the rest of the time, having gratitude for what I do have going for me keeps me level-headed. It also makes me proud of myself, and makes me feel like someone other people can look up to.
- Being a “victim” as I sometimes have made myself out to be, only slows progress, because I make a self-fulfilling prophecy of helplessness for myself. No one except for me is going to make me healthy, so I better be my own hero – I don’t have the energy to save a damsel in distress.
- I acknowledge that I tend to deny the possibility of a relapse, because I can’t be bothered with the effort it takes to get better. Because of this, I affirm to myself that I will always make the time for my health, and tell myself that as much of a hassle as it is to recover, I always learn something new, am humbled in a good way, and get better because I never letter it get out of control.
- And finally, and most practically, I feel my lymph glands, press on my liver (right side), take my temperature and look out for any other body pains. If my glands are a little swollen, I don’t fret. If I have a low fever for a day, I don’t fret. If my glands are moderately to severely swollen, or if I have a fever for a few days, I still don’t fret, but I take it as a sign to detox and/or take anti-microbials.
Rather than distrusting ourselves, we can acknowledge that stress plays a role in our health, work through our emotions, calm down as much as possible, and then re-evaluate the veracity in our symptoms. Stress will exasperate the symptoms of most autoimmune diseases; and Chronic-Lyme, or Post-Lyme, – call it what you will – is no exception. I can’t say whether stress physically worsens your symptoms, or if the perception of symptoms simply becomes gloomier. Either way, I think a good step towards trusting your gut and thinking clearly is removing stress wherever possible.
Trust In Your Doctor
Unquestioning trust in our doctors is unrealistic in today’s medical system.
We live in an age of digital doctors, where even the good doctors pay more attention to their computer screens than their patients. There is also the added element of what is going on behind the scenes with insurance companies that patients are just starting to learn about. I think the more research you do – and the more health problems you have accumulated despite following doctors’ orders – the warier you become of doctors and the institutions they are trained under and paid by.
Money is a motivating factor for doctors and experts – sadly, for some, this motivation outweighs the oath to heal their patients. Insurance companies pay doctors for every appointment, encouraging them to have patients return and to order more tests. This does not mean that every doctor out their looks at you and sees dollar signs, it is just something to notice. We see the effects of greed in the corporate world, we see it in big pharma, and yes, we can find it in the very people who went to medical school to make the world a better place.
Before I got sick – back in high school, when I was overloaded with schoolwork and a winey boyfriend – I told a (very bad) doctor that I often felt tired. Asking very little, he offered to prescribe me anti-depressants. He is, thankfully, no longer my doctor. If you find yourself distrusting of your doctor, speak up and ask questions: notice if they listen or brush you off. Notice if they care about addressing your concerns, give you options to think about or just prescribe drugs without taking the time to look over your medical history. If you do not get the care you wish to receive, ask again. If you feel consistently misrepresented, unheard or neglected by your doctor, look for a new doctor stat.
I’ve been let down by one too many doctors. The most discouraging doctors’ visits are the ones I waited months to see, only to spend ten minutes with specialists who would tell me I only have half of the biomarkers for Lupus, or that they can’t help but they will set me up with another doctor who also takes months to get in to see. In hindsight, I was not nearly as educated about medicine back then and so I could not ask the right questions. My lack of knowledge and energy also complimented my lack of assertiveness in getting more out of my doctors’ visits. I wanted to advocate for myself, so I have since learned as much as I could about Lyme to avoid these failed doctors’ visits.
Try to advocate for yourself, too, but don’t feel like you have to go at it alone. The visits that got me the most answers were usually the ones where I was too sick to drive, so my mom would drive me, sit in on my appointments and ask all the right questions for me. She had the energy, she held her ground and – after forty years of parenting – she knew doctor talk better than me. I’ve seen other moms, spouses and family members take it to the next level and keep binders of their dependents medical history. If you have distracting neurological symptoms, if you can’t communicate your symptoms, or if you are simply too agreeable to say “no” to your doctor, find someone who can come to your appointments and advocate for you.
4 Principles For You and Your Doc
I’d like to pass along something I read in Dr. Bland’s The Disease Delusion that summarizes the balance of caution and trust that I think we ought to find. Dr. Halsted Holman, a professor at Stanford U, came up with 4 principles that you and your doctor can follow. I like these principles because they encourage us to confide in doctors, but ultimately keep autonomy over our health outcomes. The principles are as follows:
- There’s no complete cure for chronic illness unless the cause of the individual’s own disease is discovered and successfully managed; individualized management over time is essential.
- For effective treatment of chronic illness, the individual must engage continually in different approaches to his or her health.
- The individual knows the most about his or her own condition and about the effects of certain therapies and must apply that knowledge in shaping a self-management program.
- To achieve success, the individual and the individual’s health professionals must share knowledge and divide authority.
I highlighted the parts that stuck out to me the most. Lyme Disease is a chronic illness that stops responding to certain treatments and starts responding to others at different stages in recovery. We don’t see our doctors on a daily basis, so we sometimes have to make educated judgment calls. Because of this, personalized and self-managed medicine are essential. Being confident enough to take responsibility in our self-management – while recognizing our limits – is essential. So is having a doctor that is willing to share knowledge with you and divide authority over your protocol with you.
Part 2 will be available in a few days! It will cover problems and solutions with research methods.