I’m sharing this post on behalf of one of the greatest millennial minds in the USA, and I implore you to read what she’s written, below my initial note here. I have known this 23 year old, Columbia University graduate from the time of her birth. Her aunt is like a sister to me and her parents are two of the most extraordinary people you could ever meet. They raised their two bright and eager children to be hardworking and ambitious, while at the same time to be compassionate and to give back to the world. For her to have to write this makes my heart feel like there is a giant fist around it, crushing it, and if I feel this way, I can only imagine what those closest and dearest to her must feel. I’m angry on her behalf, but I’m also remarkably proud of her bravery in bringing this much-impugned condition to the attention of everyone she knows, because she wants it to serve as a warning. Despite the embarrassment it might cause, despite those who will mock it or disbelieve it, she’s spreading the word, opening herself up to a boatload of censure. This is the reason I’m using my reach to help her in this endeavor: because she does a vitally important public service by discussing this so openly.
To those who doubt it: LYME DISEASE does EXIST, and if left untreated it can be horrifically debilitating and as life crushing as she describes. But for some reason, doctors have chosen to dismiss this for years, and in doing so, they’ve done an enormous disservice to the public. Even the intelligent and articulate writer, Amy Tan has spoken out about this, and some have laughed behind their hands about it, as though it’s a condition thought up by artistic types who are “dreamy” and “don’t want to work.” Well, this young woman is neither of those things. Before this hit her, she was focused, passionate and determined.Those of us who know her would not be- surprised if she perhaps runs the country someday. And then, she was stopped in her tracks by this. Even so, now that she finally has a diagnosis, it seems that despite everything that’s befallen her, she’s still focused and determined, only now her determination is to get the word out about this disease. I’m going to help her. Will you? Please read her story, below, and then, please pass it on. The more people talking about this in ALL communities, from all political, cultural, and social walks of life, the more good it will do. The medical research community needs to start taking this seriously.
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LIFE UPDATE (A.K.A. coming out as chronically ill with a highly controversial, late-stage, hard to treat, condition):
This’ll be a long post, but it’s important, and I don’t think it makes sense/ is serving anyone to keep this a secret any longer.
As probably just a fraction of you know, I started feeling very sick about 3 years ago, and things have advanced in many unpredictable ways since then. I want to share a bit of my story to try to shed light on the this particular invisible illness and to increase knowledge about what to do if you or someone you know is in this position at any point.
It started off with physically weakness, then came the widespread, unrelenting pain. I couldn’t run anymore, my body would fatigue very quickly; even if all I did was go up a flight of stairs, I felt I had just done a fully-fledged sprint with zero training. I would sleep 8 hours consistently, as I always did, but I began to wake up feeling extremely unrefreshed and sluggish. Soon, my brain was so cloudy that I wasn’t able to retrieve words or information properly. I would wake up for my morning Spanish class feeling groggy, and I couldn’t come up with the words to say despite being nearly fluent. All the logical thinking and studying I had become good at became a distant reality. I couldn’t add basic numbers (I often find myself these days staring at a restaurant check, unable to make sense of straightforward math, wondering how on earth this could happen to someone who was sharp, who took pride in her intellect, whose memory was always incredible in a creepy-I-remember-everything-about-you-kind-of-way).
And yet, here I was. I had trouble reading even straightforward text partially because I would forget what had come before and partially because absorption just wasn’t taking place. I would get lost in familiar places. I couldn’t remember what I did the day before, and had to go through serious steps to arrive at a conclusion, which was still fuzzy and uncertain once found. I started getting chronic bouts of itching that no dermatologist could resolve, and severe depersonalization (my physical perception of the entire world around me began to be dream-like, not in a pleasant way, but essentially there’s this potent visual removal from reality that now has become a constant daily symptom). I started having a widespread cracking problem, my back and neck being perpetually out of alignment and in need of relief every couple minutes, sometimes seconds. Throw some nausea, dizziness and heightened sensory sensitivities (excessive car sickness, serious inability to be close to any strong scent, severe discomfort in lots of my clothes) into the mix and every part of my body and existence that could have been affected was affected.
I first received a fibromyalgia diagnosis, which named my physical pain, but didn’t explain why it was there in the first place. And it offered no rationale regarding what was happening to my mind. I was then given a myalgic encephalomyelitis diagnosis (chronic fatigue syndrome) which, again, was just a name. But at least this time, it referred to both the cognitive and physical troubles I was experiencing.
I went doctor to doctor, without being able to find a solution. One doctor, when I asked her if any other sufferers were trying to maintain normalcy and keep at their passions (school-wise, career-wise etc), told me most of her patients had given up. I burst out in tears and she didn’t seem to care.
I tried over 30 prescription drugs (probably pushing 40 at this point) over the last few years. But neither an Alzheimer’s drug, nor all the stimulants under the sun, nor a year of experimental antiviral therapy with a herpes drug (with no history of herpes) has yielded any improvement. The once social, outgoing person I was became intensely anxious. If I couldn’t find the thoughts, if I couldn’t express myself, if my memory had gone out the window, then I wasn’t myself. I lost myself, my very identity. And with that inevitably came sadness, depression, perpetual frustration. The last year or so of college, I started to avoid getting together with people. I didn’t have the energy, and the symptoms were just too much to manage. So if I went MIA on you, this is likely why. And I wish this wasn’t the case, but there’s a huge social component at play with this kind of condition. I was never intimidated by intelligence, and here I was avoiding interactions for fear of being judged in the midst of this strange fog that I was in. For fear of being extra out of it (ex. someone asked my what my major was in college a few days back at a gathering— I couldn’t tell them. It was only after I bought myself time that I could answer the question) and not being able to perform to my potential. For fear of not being able to physically keep up with my peers during an outing.
I managed to graduate after debating dropping out altogether. I struggled through school- despite the fact that my grades didn’t make that known. I was part time my last ~2 years since I had to drop many classes because my mind was barely working. Every single day was a battle in which I hoped for little windows, a few minutes, of clarity and a lower load of the other handful of symptoms so I could just be a normal, functional student again. I went from knowing how to sketch out a work plan to having no ability to plan and complete assignments in an orderly or organized fashion. And while there was a short period in which one medication worked to relieve most of the cognitive issues (coinciding with an internship that gave me lots of satisfaction and resulted in a full time job I’ve had to postpone indefinitely), it stopped working after 5 months. And things, since then, have gotten more and more difficult. New symptoms have come into the picture, and others have intensified. I am now equipped with more information and more answers, but the journey out of this mess is going to be hard.
In retrospect, there were many signs that my doctors didn’t pick up on. This is often the case with late-stage Lyme disease (you can look into Ally Hilfiger’s or Yolanda Hadid’s story to see how even with fame and fortune, this ailment can be neglected by the healthcare system for years and years). If you catch it early- get a hallmark rash etc- you will likely be fine after just a few weeks of antibiotics. But if you don’t, the infection wreaks havoc and ends up infiltrating your nervous system and doing just about everything you can think of. Had this been caught soon after the onset of symptoms, I would have likely been back to normal in a very short period of time. But now, this journey will require more long term experimentation, financial investment, risky trial and error. Some people have to take out second mortgages just to afford such expensive and non-standard medical treatment. Thankfully, I still have people supporting me, helping me get over this so I can get back to the healthy life I used to lead.
A tick, something seemingly so tiny and harmless, can destroy your life, and standard Lyme testing will often not be robust enough to tell you what’s happened to your body. False negatives are common. Being on the lookout and asking for more detailed testing can prevent you from years of misdiagnosis and expensive, off-target, treatment.
To all: protect yourself when outdoors. Cover yourself with appropriate spray and check for ticks, or have someone else do it for you. Not the sexiest of activities, but worth your time. About half of people affected don’t recall ever being bitten (the tick secretes anesthetic saliva). They go on to develop disabling symptoms, and they/their physicians might not connect the dots. And while it is way more common in states like Connecticut, New York and Massachusetts, it can happen virtually anywhere.
To my friends who are aspiring physicians or already on the road to a career in medicine: listen to your patients. Keep your eyes open. AIDS was a just punchline to many people and politicians before it gained legitimacy and its gravity was recognized. And while the CDC believes that 3 weeks of antibiotics offer a quick and easy cure, I have encountered people, some of them esteemed physicians turned chronically ill patients, who have had no other choice but to challenge this established thinking to get their lives back (recent research suggests that the organism can persist in the body beyond such brief treatment, especially in cases that were not treated in a timely fashion).
To those who know someone with this, or another poorly understood chronic illness: tell them you love them and you’re not going anywhere. Be a constant source of support- social, financial, political- whatever you can spare. These illnesses can be unnecessarily polarizing, and sufferers need to know you’re on their side. They are fighting with all they’ve got to get their life back and will need some help. No one ever wants to be sick. No one ever wants to be stripped of themselves in the face of illness and go from being independent and productive to dependent and depleted of energy. And I’d like to remind people that someone can look just fine (or even the best they’ve ever looked to you) and be the farthest from that imaginable.
As for me, my full time job right now is not what I thought it would be. I’m not currently working in consulting. That’s been put on hold. My hard work is contributing to an effort I certainly didn’t expect: to get the old, healthy me back and to speak up about this unfortunate condition as much as I can. Did I think I would be on 10 drugs and many handfuls more of other pills at age 23? Definitely not.
But here I am, and all I can do is keep at it and speak up about this debilitating condition that has the potential and power to take away one’s very essence. I’ll likely start a blog soon to catalog more of the story (featuring buckets full of nasty comments from doctors and more entertaining things that people have said to me over the course of my illness) and my progress (which is hopefully on its way).
And if there’s any way I can be of help to anyone going through something like this, please don’t hesitate to reach out. Thanks so much for reading.
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Note: To contact the author of this post, send me an email or a private message on Facebook. Thanks, Patricia
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