Last weekend, I skyped with my dear, dear friend and faerie queen, Genevieve Meehan, out in Denver, Colorado. Gen, as someone who works in the cannabis industry, told me a lot about new legalization policy and how the industry is being constructed in a responsible and safe way. As a medical marijuana patient herself, we also spent a large amount of time talking about being chronically ill, her diagnosis process, and how to be easier on yourself.
Listen to our conversation or check out the transcript below! If you want more information on Ehlers Danlos, marijuana legalization, or any of the other things we talked about, check out the links at the bottom of the page!
On Getting into Drug Policy and Harm Reduction
Liz: Hi folks, I am on with Genevieve Meehan, one of my oldest friends. She is living out in Denver, Colorado. She is a marijuana legalization advocate, from early days. She’s been working from college [on this issue], from Students for Sensible Drug Policy. She interned with the Drug Free Communities Program with the Coatesville Youth Initiative and now she works for Vicente Sederberg, working out in Denver with newly legalized recreational marijuana out there. So, making sure folks are compliant with new regulations and things like that. When she was in college, she studied Conflict Resolution, Political Science, Public Policy, which segued into your work with Students for Sensible Drug Policy, right?
Genevieve: I got involved with Students for Sensible Drug Policy mainly because I was studying public policy, but also interested in the effects of cannabis legalization for communities, as well as already had this recognition that the War on Drugs was very much harmful to communities and a human rights issue. So that kind of ignited my passion there. As I got involved with SSDP, I learned a lot more about various issues. Something I learned a lot about was harm reduction, and that is why I got involved with the Drug Free Communities Program in Coatesville. They had seriously outdated drug education materials when I was there and I did my best to try to create some material which was, hopefully, more useful. For those listeners who may not know, my aim [harm reduction] was essentially to take these materials which were less informative, telling kids to basically “Just Say No” to drugs, and make them more generalized and informative; in that, “Should you choose to do this, here is what you need to know to keep yourself safe. If your friend does this, here’s what you need to know to keep them safe.” These are the things that I think are important and hopefully, some things in Coatesville changed a little bit.
Liz: You did mention earlier something about the coloring books and things like that, which maybe aren’t the best way to reach high school students.
Genevieve: This was beyond. This wasn’t even just “Just Say No” promotional materials. This was a coloring book with dinosaurs and at the bottom of the page, it just said the name of the drug. I, very specifically, remember this one page that just said, “Ketamine” and there’s this dinosaur just losing it on the page, with big eyes with huge spirals inside of them. His arms were up in the air and you’re just like, “Wow. I don’t know if that’s a good depiction of what ketamine does.” Honestly. You’re looking at this picture of this spun out dinosaur and it says ketamine. If a kid later on is offered ketamine, maybe that is appealing. Maybe you want to be that dino.
Liz: That’s amazing. Harm reduction, being a big part of the education with younger students, when you were with SSDP, how did harm reduction factor into the kinds of initiatives you guys were working on?
Genevieve: I was a young college student, I was a freshman, and this was something that I didn’t know a lot about, but obviously recognized a need for on my college campus. On a college campus, a state school, outside of Philadelphia, people are partying, right?
Liz: College kids party? No…
Genevieve: College kids are partying. One thing, specifically on my campus, that was so problematic to me once I had a greater understanding of the meaning of harm reduction, was that we had this policy where if I was drinking with a group of girls in my dorm room and someone was too drunk, or even if we were trying to go back into our dorm room at night and someone was too drunk, if you called for help, you were in trouble for being drunk. You got an underage for calling. How does that incentivize kids to take care of one another, right? Because if you are partying and someone is not doing well, how do you yourself have the moral compass to be like, “Alright, I’m going to help this person out and I might get kicked out of school for it”?
Liz: It’s dangerous. That’s a dangerous policy.
Genevieve: It’s a really dangerous policy. So, we worked on campus to do some stuff regarding Good Samaritan policies on campus, so that you were inclined to call for medical help and stay with the person who needed the medical help, and then being exempt from any underage drinking charges. The problem that I faced personally with this was, on campus, we were able to get this to encompass alcohol, but not other drugs. I think it’s really important regarding other drugs too, because though alcohol is incredibly dangerous, doing other drugs and not knowing their outcome and needing medical attention for it is even more dangerous, or is sometimes even more dangerous. Regardless, if someone needs medical attention, someone’s got to call.
Liz: Absolutely, and shouldn’t be penalized for making that call. So that was with SSDP, and you went down to Washington and helped with some of the wider policies too, you participated in different conferences and things.
Genevieve: I did a fair amount of lobbying. I did some lobbying in Washington, D.C. SSDP hosts things called “Lobby Days”, which are really awesome. This was a really good experience for me as a college student, because I don’t know that I would have done that otherwise. I don’t know that I would have had the self confidence or known what to say. Those are really good programs. We did that in Harrisburg, as well. That is what got me more and more interested in policy in general, too.
On Recreational Marijuana Legalization and Regulatory Policies
Liz: That makes a lot of sense. Also, the landscape around specifically marijuana legalization, recreational marijuana legalization, is almost 100% different now.
Genevieve: Yes. What’s so interesting is, at that time that I’m doing this, I’m a young college student. I’m a freshman or sophomore in college, and marijuana is not recreationally legal anywhere. I remember very clearly when Colorado passed recreational marijuana legalization thinking, “Wow, this is really cool! Maybe the work that I’m doing here now with SSDP and within my education is actually going to be applicable.” It’s not like I’ve been out of college a very long time. The job that I have now didn’t exist when I was in college, so I really lucked out there, I guess. So that’s incredibly interesting to me. Even since recreational marijuana legalization, the regulatory environment changes so rapidly. You’ve got a market that essentially didn’t exist before. There are so many different product safety regulations: what’s in this food with the cannabis? Or packaging and labelling regulations. It’s all just so new and so interesting, and things have to be discovered, have to be fleshed out.
Liz: I think that’s so cool, to be part of this. You’re on the precipice of something incredibly new. And Colorado is on the forefront of the rest of the country too, and kind of figuring out the model that might be implemented country-wide at some point.
Genevieve: Sure. I really do think that. I also think that it’s very interesting to be here, to get to see the changes in the industry that I get to see. Like you mentioned, this is brand new and this is probably going to be happening everywhere. This is inevitable at this point. After the November 8th election, we officially, I think, have passed the tipping point. Nationwide legalization is inevitable. So, these rules and regulations and these things that people that I work with are involved in fleshing out are going to be applicable elsewhere and are going to be like, “Hey, this worked” or “Hey, this didn’t work.” It’s all about doing this very responsibly. You’ve got a new product on the market and you need to make sure that consumers are safe, that businesses are operating in an ethical manner and being compliant with the new regulations. There’s a lot to think about as far as creating a very respectable and sensible industry. You’re a little bit in the face of a stigma, as well.
Liz: What kind of stigma?
Genevieve: Prior to recreational marijuana legalization and in the media in general, we’ve got this idea that stoners are lazy or disorganized, and we’re all stoners. We’re all always high. There’s an importance in doing this in a way that policymakers from other states, who may not think this is a good idea, because they may think it looks a lot more disorganized than it is, come to Colorado, go to a dispensary, buy recreational marijuana, and have a wonderful experience and a safe experience. And that’s everything down from the way that the business is run right down to that budtender.
Liz: They’re called budtenders? That’s my favorite.
Genevieve: They’re called budtenders. You’ve never been into a marijuana shop?
Liz: No, I live in New York City.
Genevieve: Yeah, they’re called budtenders.
Liz: I like that so much. That’s amazing. With Colorado on the forefront of it, it’s sort of permeated into the community. You’ve seen it change from… You’ve described it as a human rights issue before and I agree with you. But, what sort of things fall into that human rights realm?
Genevieve: The way that the war on drugs…there are infinite things I could say about human rights issues and the war on drugs. But very specifically, in Denver, Colorado: minorities and non-violent drug charges. That’s an issues that Denver, Colorado still faces. It’s a big city. But, the idea that cannabis can be responsibly purchased in a store from someone with a license takes crime off the street. Something else that’s so interesting to me is that we’ve actually seen a decline in domestic violence in homes that have cannabis users as opposed to homes that have alcohol users. Now that cannabis is a safer, sometimes more responsible, option, you’re seeing a decline in domestic violence. There are so many little factors that you wouldn’t think of. Again, this is new, uncharted territory.
Liz: I was reading a report on juvenile delinquency. I think the numbers were from 2015, 2014 maybe, so it was a while ago. Even so, the report said with kids getting convicted for misdemeanors or even more serious crimes, with the majority of these kids, it’s drug related charges. It messes up their future, they’re getting put into juvenile detention centers. Juvenile detention centers are mostly filled with nonviolent drug offenses.
Genevieve: The other thing that’s just so interesting to think about is: in Colorado, if you want to recreational marijuana, you have to be 21 and have an I.D. to prove it. I know that if, in high school, I had to be 21 and have an I.D., I would not have been high nearly as much as I was.
Liz: It’s a good point and it’s something that maybe folks who are fighting against or maybe were fighting against… I don’t hear so many people outspoken against legalization these days.
Genevieve: I think we’ve kind of hit the tipping point. I think a lot of people who have previously been against the recreational legalization of marijuana are generally misinformed and a little bit concerned about things that Colorado is actively working on. Like edibles appealing to children, that’s a scary factor. What if you’ve got a product in the home and your child gets into it? That can be incredibly dangerous. So, this is a looming unknown for states who don’t have these policies yet. But here, where we’ve got this, we’re working on it. Child resistant packaging, opaque packaging, exit bags. When you leave a dispensary, they’ll give you a ziploc bag essentially, that’s got a thing that tucks in, so it’s locked. This is not for all products, but if you’re purchasing an edible, if you’re purchasing a topical sometimes. It depends. These are all things that are being worked on. I think now that policy is reflecting this, policymakers who come here and have those fine experiences are saying, “Okay, that’s not as scary as we thought it could have been.”
Liz: Right, and you’re setting a precedent too. They have something they can now point to and say, “This worked” or “This is how we want to do it even better.”
Genevieve: Exactly. And I think that’s why on November 8th we surpassed that tipping point, because people are saying, “Okay, we can do this too.”
Liz: “If Colorado did it, we can do it too.” Absolutely. So, you’re working specifically with Colorado’s legalization, do you know nationally what sort of things we should be keeping an eye on? Future votes, or initiatives around recreational legalization?
Genevieve: This is kind of not my area of expertise. And here’s what I should say, I don’t have an area of expertise with this right now.
Liz: Can anybody actually be an expert in this right now, since it is so uncharted?
Genevieve: The people that I work with are so intelligent and so wonderful at what they do, yes. They are experts, but I am just lucky to be a fly on the wall. I’m just trying to soak as much of it in as possible. Speaking to nationally, California finally passing recreational marijuana is a big deal. On a county by county basis, the way people are going to be able to create policies, I think that’s really important. The medical laws in California were structured a little bit differently than the laws in Colorado. California has delivery services and things of that nature. I had a friend who was in California for a month and staying in a hotel. This was for business. He was able to get a medical card using his hotel address and have marijuana delivered to him, and he never even had to see a doctor. This all happened online. I don’t know. I’m a cannabis patient and obviously, I think cannabis should be accessible to those who need it. I think that that’s really important, but the system also has to have some integrity. If you did this online, and the card was mailed to your home, that’s practically recreational marijuana as is. You’ve got to restructure. You’ve almost got to backtrack and fix the policies along the way. I think that’s going to be really interesting to see the way that California shapes up.
On Ehlers Danlos and Being Diagnosed
Liz: This is sort of to shift gears away from recreational marijuana a bit sort of into medical marijuana and sort of into some other things. You mentioned that you are a medical patient, as well. Did you want to talk about Ehlers Danlos?
Genevieve: Yeah, sure. I use medical cannabis. This was a big motivator for me to get involved in the work that I’m involved with. As I mentioned, in college, I was involved with SSDP. I was not sick then. Ehlers Danlos is a genetic condition that affects your collagen production and retention. I have joints that regularly dislocate. It’s a lot of connective tissue pain. When you think of connective tissue, this affects a lot more than the muscles around my shoulders or my muscles around my hips. Connective tissue is organs. Connective tissue is literally everything that makes up your body. There are just so many weird symptoms of this.
Liz: It’s incredibly rare, too.
Genevieve: It is very rare. I truly think that it is less rare than we think, because I think that a lot of people live with Ehlers Danlos Syndrome without knowing what the fuck is going on with their bodies and kind of just keep on keeping on.
Liz: Your diagnosis process was insane, as well.
Genevieve: It took me five years to get a firm diagnosis and it’s not even considered firm, because I can’t afford the genetic testing to do it.
Liz: Do you want to walk me through what that diagnosis process was like?
Genevieve: Yeah, so I guess this really ties in with my being a cannabis patient advocate too. So, I’m in college, I’m not sick. Around my third year of college…
Liz: You were playing rugby, hiking all the time…
Genevieve: Right! I was the perfect vision of health. What felt like suddenly, I fell so ill. I initially thought, “I’ve got Lyme Disease. I, for sure, have Lyme Disease. I spend every weekend hiking and camping. I live in the Northeast. There’s a tick on me. What’s going on?” I remember being in the bathroom and looking at my legs, trying to do a tick check. And I was like, “I don’t see a bulls-eye. I don’t see any of these things, but I know that this has to be Lyme Disease.” I called my primary care physician, my family doctor, who wasn’t in Westchester, in Allentown. I’m calling home and just saying, “I think I’ve got Lyme.” She was like, “Okay, come on in. Let’s make an appointment, let’s do the test.” She actually prescribed me the antibiotic for Lyme Disease, before she even got the test results, because she was like, “Yeah, this is so Lyme Disease. These are your symptoms. It’s Lyme. You’re fatigued, you’re having a little bit of weird creaky joint stuff.” When she called me and told me that the Lyme Disease test came back negative, she was like, “Do you feel like the antibiotic helped?” And I was like, “That made me feel like shit, actually.” She was like, “Okay, well then, I’m not sure what to tell you.” I said, “Well, I’m fatigued and everything on my body hurts right now. What do you mean?” She was like, “You don’t have Lyme Disease, so…” This is where being that perfect vision of health really sucked, because I couldn’t be like, “No, I’m sick.” I didn’t look sick, so I was not being taken seriously. So, not Lyme Disease. She was telling me that I had to see an infectious disease doctor, in case it was some other kind of bug bite. She was basically just going down the line of “What bit ya?”
Liz: Anything it could possibly be.
Genevieve: Right. Not thinking that I had a genetic issue that I had probably been navigating my whole life. So, doctor after doctor. Rheumatologists, it turned into cardiologist for some of the symptoms, neurologist, endocrinologist. I saw so many doctors over the course of a few years. Every one running all of these ridiculous tests and everyone prescribing me medication that was going to help. All of them knew what other medications I was taking. Granted, what I have is new territory, just like everything else, and I think that they really were trying to help me. I don’t think it’s one of those circumstances where… You know how the pharmaceutical industry has infinite number of things that are wrong with it, but I genuinely don’t think any of these doctors were prescribing me something just for the hell of it. These were kind of obscure drugs. It was: I think that we can treat this, by doing this. They were really just trying to piecemeal a solution for me. I was so dead set on not taking pain medication.
Genevieve: At the time, I was 22 years old and I really thought, “If we don’t know the solution for this yet and if this is something I’m going to navigate for years to come, I can’t start taking prescription pain medication for this at 22; or by 25, I’m going to be dependent on them.” That was a very big…I don’t want to do that, so figure out what’s wrong with me and fix it. Maybe I egged that on by refusing the pain medication, asking repeatedly to find the solution, but ultimately, I became such a lab rat. Everything was trial and error. I was given the medications for fibromyalgia, rheumatoid arthritis, lupus, and kind of one after another.
Liz: They had you on a low dose of chemo for awhile, I remember that.
Genevieve: That is how they treat rheumatoid arthritis. It’s called methotrexate; it’s a very low dose of chemotherapy. I was first taking it by pills and then injection. Not injection for long, because it made me a lot worse. As it relates to rheumatoid arthritis, rheumatoid arthritis is autoimmune, so your immune system is acting in a way that it thinks what is in your joints is what it needs to attack. So, it wears down your joints that way. The low dose of chemotherapy is designed to get your immune system to back off. For me, who did not have rheumatoid arthritis and actually was dealing with a collagen deficiency, a low dose of chemo really fucked me over. That made me super sick. So, we’re going down the path of all of these autoimmune things that might have been wrong with me, but I’m also reading for a holistic approach I can take. I’m changing my diet. I was essentially eating a totally plant-based diet at the same time that I was taking this low dose of chemotherapy. For a woman who needs a lot of meat and a lot of cheese because I have no collagen, eating nothing but a plant-based diet while taking a low dose of chemo…I was just a pile of bones.
Liz: I remember around that time, I had come home and I would see you every few days or something, and you were exhausted. The fatigue was some next level. We would sit by the pool or sit outside for an hour or two, and then it would be time to go back to bed.
Genevieve: That’s something I still have. That wasn’t medication related. That’s symptomatic of Ehlers Danlos. I do not think that any of the medication assisted me with that. I think it made it a lot worse. That’s something I navigate. For me, the late afternoon is so hard. I think that’s natural for everyone. I think everyone starts to crash around 3:30. But for me, if I have to go meet with someone in the late afternoon… There have been days where I’m at my desk and I’ve got to stand up and I’ve got to walk over to this person’s office and I’m like, “How am I going to do this?” I remember so specifically that the attorney that I assist asked me to come to his office and it was one of those moments where I was just kind of like, “Fuck, I have to stand.” But you also know me, I never want anyone to know it. So I stand up and I go, and he has a really comfortable chair in his office and I plopped down in this super comfortable chair. But he was like, “Actually, can you come over to my desk? I want you to look at my laptop screen with me.” I think the look on my face was probably so ‘bitchface’. It’s one of those things I really try not to let people know about, that fatigue especially. I want to keep that under wraps.
Liz: Sure, that makes sense. But sort of back to the diagnosis process. I think we left off where you were on all these different medications for all these different autoimmune disorders.
Genevieve: So, a symptom of Ehlers Danlos Syndrome, and you don’t have to have Ehlers Danlos Syndrome if you have this, but it’s called postural orthostatic tachycardia or pots, for short. If I go from seated to standing too quickly, my blood pressure drops and my heart rate increases to try and get my blood pressure back up. And the result of this is me feeling incredibly faint. So that’s going on and that’s weird. I’m on all these medications and now this is a new symptom. At this point it was really hard, because it was like, “Is this symptom or is this side effect?” So I was experiencing really bad episodes of tachycardia, where my heart rate wasn’t going back down and I was having these weird fainting while seated or while laying and muscle twitches or spasms, which can be symptomatic of Ehlers Danlos. But I would say, they don’t happen to me day to day now, so that was definitely medication related. When you’re fainting and you’re already seated, I was just zoning. I was completely tuning out. I could hear what was going on around me, I was right there with you guys, but I was not talking, I was going catatonic. That started happening over the course of a few days, and then one day it was happening every 30 minutes. I was so lucky to be at my parents’ house, I probably gave my parents an absolute heart attack. This was probably really difficult to watch your kid do. But I was trying to explain it, squeeze hands if I could, but I was just going and then my muscles were twitching. So, they’re calling the doctors, trying to figure it out, and my dad is like, “We’re going to the ER. I don’t know what this is, I don’t know if you’re having seizures. I don’t know if this is a symptom or if this is a side effect.” I get to the ER, they admit me to the hospital. IV hydration started to help right away. I did it a few times right there in the ER, so the nurses all saw and were like, “Man, this is bizarre.” All the while, I’m too fatigued to get up and walk unassisted. They admit me to the hospital, they pull me off all of the medications I was on and just IV hydration and IV ativan for five days just to get all of that shit out of my system. It turns out it a neurological reaction, like a chemical shitstorm in your brain. All of this stuff was just in me and going through my system. It wasn’t like they had me on all of it at any one time, but you can’t expect that you take someone off a low dose of chemotherapy and prescribe them a new medication, like the chemo is just out of their system. It’s not like it’s gone. That, to me, was just like, “Holy shit. I’m done with this.”
Liz: I remember you telling me that when you were coming out of that stint in the hospital, one of the doctors said to you, “We really know how to poison people.”
Genevieve: That’s exactly what he said. I was just like, “Why did this happen?” He was an internal medicine doctor and he said, “I can assure you that we were all trying to help, but we really know how to poison people.” That, to me, was when I was like, “I want to continue to pursue a diagnosis, but I’m not going to keep taking shit.” Then I finally got this absolutely wonderful doctor, who was a neurologist, helped me a lot. He was able to find a balance of medication that still is some of the only medication I take. He was essentially just trying to treat migraine at this point, which is Ehlers Danlos symptomatic. He discovered that if he puts me on very low low doses of antidepressant, and it’s an old school antidepressant. I don’t think they use it for that anymore. My nerves backed off. Right at the base of my neck is a joint that dislocates. It actually doesn’t dislocate, it subluxates. That’s where I experience the most collagen issues. The nerves back off, which desensitizes it. It’s chilling me out back there. So that was super useful, and very noninvasive. That was something that I stuck with, but still was like, “I need to figure out what this is.” It was actually when I was in the hospital and they were pulling me off of all these meds, when a rheumatologist came in. She had never seen me before, she was just on rounds. She goes, “Has anyone ever looked into the hypermobility of your arms and legs?”
Liz: What is hypermobility?
Genevieve: Because of the lack of collagen, they’re double jointed essentially. Where you hold your arm straight, me holding my arm straight is bending all the way back.
Liz: It’s almost a right angle in the other directions.
Genevieve: Exactly. My arms do that, my legs do that. Apparently, my other joints do it, but you can’t quite see it. My shoulders do it, but it’s more apparent on the elbows. So that’s the first time I heard the term Ehlers Danlos Syndrome. She referred me to a doctor at Penn who was like, “Yeah, that’s probably what you’ve got.” They also looked into something called Sjogren’s Syndrome, which was also an autoimmune thing. What was so bizarre about all of this was that they’re testing me for this huge spectrum of all this stuff, and I wasn’t showing positive for any of it, but I wasn’t showing negative for any of it either. I was quote borderline. Which is like, what the hell does that mean? On the test results, they give you a spectrum or a range of normal and I never fell into it. I was always, just slightly, just a few points off. To me, that was the most frustrating. I would have loved for one of these things to just shoot up.
Liz: That was what, four years in the making? To get to that diagnosis?
Genevieve: Then it was still uncertain, because it was like “Yeah, probably! But I don’t really know what that looks like, I’ve never seen that.” Then I moved out to Colorado, kind of on a whim, and the doctor that I saw here, said, “The way I’m going to approach this is that I’m diagnosing you clinically. It’s not a ‘yeah, probably’, it’s ‘yes. this is what you’ve got.’ You check all these boxes.” The genetic testing for this is an expensive thing and is it really necessary, if I check all the boxes? Do we really need this genetic testing? I’ve been tested for enough at this point.
Liz: And that’s such a scary process too.
Genevieve: The other thing that’s always in the back of my mind, because of all the things I’ve come up borderline with: Ehlers Danlos Syndrome, which I had never heard of until that day in the hospital, and they were like, “You really have every symptom of this.” There are different types of Ehlers Danlos Syndrome. I have the most common type, which is this hypermobility and pots. There are way more dangerous types. Like I said, your connective tissue is everything, your vascular system. I am very blessed that this doesn’t affect my vascular system at all, but some people have vascular type Ehlers Danlos, where if you get a slight bump, your whole venous system could just get going. So they said, “You’ve got all the symptoms of the hypermobility type of Ehlers Danlos Syndrome.” So, going with it.
Liz: You’re now at a point where you’re not on all of these medications. You treat yourself somewhat holistically, just in terms of your eating, you’re very careful about that.
Genevieve: Like I said, I was doing that whole plant-based thing. That really put into perspective for me that health is so relative. What is good for one person isn’t necessarily good for everyone. And I think we have, a lot of times, this blanket term or this blanket idea of what is a healthy lifestyle. For me, it is not healthy to go for a run after work. That is not a healthy activity for me. That is going to put me in bed for the next week. Also, eating a plant-based diet, for me, is not healthy. For another person, it could be the best possible thing. I treat myself generally holistically. I take a lot of vitamins and supplements now. I take a collagen supplement, I don’t notice too much of a difference for me. Collagen supplements are typically a hair, skin, and nails thing, not the kind of collagen deficiency that I have. What’s been incredibly effective for me since I’ve moved to Colorado is topical cannabis salves. The cannabis plant isn’t all THC. CBD is what is in these salves that helps me, or sometimes it’s a one-to-one ratio of CBD to THC. The pain is relieved very much. I have a few different kinds that I like to use: some are where I’m going to put this all over my arm, those are usually more like lotions. And some are oils that I’ll put right on this spot, in the immediately affected area versus a general soreness. There are different products that I use in different ways. It’s also interesting, I really don’t smoke cannabis, at all. It’s kind of a recreational thing, if I do. As far as CBD as medicine, topically is incredibly effective for me. They also make it in a little patch that I’ll put it on the inside of my wrist, and it’s pain relief all day. There are a wide range of things that I also have to explore, that I never have and are CBD related. They’re still coming out on the market constantly.
On Being Kind to Yourself and Dealing with Chronic Illness
Liz: To that point, I was sort of on the sidelines watching you do these years of being diagnosed and watching how you manage it now. Something I’ve always, always admired is how, even though you were fatigued and in pain, you tackled it with, “Well, I’m going to read everything that I can on this and I’m going to look for the correct solutions and I’m going to learn as much as I can.” You still tackled it head on, even while feeling like crap. Say somebody listening to this is going through something similar, how would you advise them to approach a bad day?
Genevieve: Something that I have learned, and am still learning and require many reminders; if you’re having a bad day with your health, it is sometimes just a day. If you’re chronically ill, sometimes these days turn into months. Sometimes this is a bad time that you’re having. Sick days for someone who is chronically ill is not the way that you would experience a sick day. It’s like a perpetual flu feeling. The way I tried to approach bad days is just to remind yourself that it’s cool to take the time that you need to take for yourself. You know this about me, I am a planner. I had to learn to be very flexible with myself. Sometimes not everything on the to-do list gets done. That’s one of those things that falls under the “healthy is relative” thing. If the dishes don’t get done tonight, that’s just fine. They’ll get done. For me, being someone who’s particularly particular about those things, that is something that I’ve really had to relax into. I think it’s really important for anyone going through the diagnosis of a chronic illness and experiencing those bad days, that just because you don’t have a diagnosis yet doesn’t mean you don’t have an excuse. For me, that was a big thing. I didn’t have Lyme Disease, I didn’t have lupus, I didn’t have rheumatoid arthritis, but I was still in pain and I was still really tired. I still had a really valid excuse to be in bed all day.
Liz: That’s a good point. That’s good advice, I think, for anybody. If you need the day, take the day.
Genevieve: Everyone needs to be a little bit more forgiving with themselves. As someone who was so uptight, I’m glad I’ve learned this. It seems to be a very mentally healthy trait to have. The other thing that I find, and this isn’t just an approach to bad days, this is an approach to all days: going through something like this, especially if you’re experiencing a wide variety of symptoms, it’s really important to write a lot. There are emotions that are brought up in you when you’re going through a diagnosis of something. First and foremost, when it’s unknown, and then it’s another layer once it’s known. At first, there was this unknown, of I didn’t know what I had and I thought, “If someone could just tell me what I have, I would be stoked. That would just be great.” And then there’s that, “Oh, this is what I have. This is what this means for my life and this is not going to go away.” I feel like these are really difficult things to talk about, too. Writing is just so important, and reading is so important, because there are people who are going through similar struggles. Your immediate personal crowd, your family, your best friends, probably have not.
Liz: I think we had a conversation towards the beginning of this process. I think I said to you, “Man, I don’t know what to say or do. How can I help in both words and actions? I’m sure you don’t want me hovering around and asking if you’re okay every six seconds.”
Genevieve: Right, but still, there are times that a handful of people that came just to hang out with me that I will never forget, because it was so refreshing to have a normal conversation. Being sick was my life. I didn’t really want to talk about being sick, but that seemed to be all anybody would try and talk about with me. Then, there’s also this aspect of…with my parents, this was probably so difficult to watch their daughter go through. When I was feeling particularly emotional, there are times I vented to my mom or dad and now, I wish that I hadn’t. That was probably so much more difficult for them. First they’re seeing me in all this physical pain and then I’m having anxiety about ‘What do I do for a job? How am I ever going to get out of this basement?’ You know, things like that. They probably didn’t need to hear all that, and I even immediately after saying it was always, “I’m such a Debbie Downer.”
Liz: But knowing your parents, and I feel that this is probably true of most parents, they want to be there for both the physical stuff and… If you weren’t talking about it, it would probably scare them.
Genevieve: Yeah, they both know me just so well, too. I felt then that I was such a Debbie Downer and now, I guess this is a hindsight is 20-20, but now I’m here and I have a job and I’m pretty much okay. Now, I’m like, “I really wish I hadn’t worried you with all my crazy, existential crises when I was absolutely losing it.” But it was a really difficult thing to process. On the mend, I really started writing and journaling, and not just about my emotions, about my symptoms. It’s something I wish I had done through all of it, because I sometimes wonder if just documenting my symptoms would have been a way to navigate them earlier on.
Liz: That’s good advice. Then you could point to specific things: this is recurring, these are the patterns that are happening. That’s a really interesting hindsight perspective.
Genevieve: I also had difficulty… Doctors suck. I would get doctor anxiety. I always had to make a list of things I needed to tell them, but I never got through that list. It’s very interesting to me that I never felt heard.
Liz: I remember we were talking a while ago about a form of medicine that is taking hold which is that narrative medicine. Putting together the story, instead of ‘here are the list of symptoms, where does it fit?’ Instead, taking a look at the patient.
Genevieve: I think that that’s so important, especially with any chronic pain patient. If I have a day that is sad or stressful, even little things, I’ll notice pain be a little bit more noticeable to me that day. If you have a patient, a chronic pain patient, who has been through something particularly traumatic, treating them for their pain is probably not what you need to do. I think that treating them with respect to that traumatic event, is a lot more important. That will probably cause the pain to end. You are made up of so many facets other than what your blood test is going to show.
For More Information:
Students for Sensible Drug Policy: SSDP Website
Ehlers-Danlos: Ehlers-Danlos Society
Vicente Sederberg, LLC: Official Website
Denver Marijuana Business Licensing: Denver Government Website
The Mighty: Official Website