Dear Bartender, I am the girl that I ordered the Plymouth Gin and Soda with lots of lime the other night. You seemed really cool and offered to give me some lime that was already squeezed. Before I agreed and could finish asking my questions you were already pouring it in my drink and I could not stop you fast enough. You see, I wanted to ask you if it was fresh squeezed lime before you poured it in my drink, but everything happened so fast.
You went on to tell me that it's NOT fresh squeezed and comes in a bottle. When I asked you to see the bottle so I could read the ingredients you seemed annoyed and said it was locked up. You could not even tell me the brand. I briefly explained to you that I have some medical conditions and can’t drink it unless I know what is in it and you rolled your eyes and said it was "only a little bit”. You hesitantly and annoyingly remade my drink. There was no one else at the bar, so its not like I was being difficult when the bar was busy.
You see what you didn’t know or want to take the time to hear is that I have Chronic Lyme Disease and have been really, really sick for 3 years. In addition to Chronic Lyme I also have 4 Autoimmune Diseases (Celiac, Hashimotos, Alopecia & Psoriasis) as well as 60+ food allergies due to having Lyme Disease.
Chronic Lyme is an invisible illness which means I look normal and healthy on the outside, but I am dying on the inside. Behind my makeup and smile I am very ill and waging a full on war with bacteria that have decided to make my body their home for the past 3 years. It is going to take years for me to recover and get some of my life back, but I will have Lyme for the rest of my life and have to take care of myself in a whole new way.
If you had poured that lime in my drink 3 years ago I would have drank it no problem, but you see things are different now, and it's not by my choosing or control. I have to be incredibly careful of anything I eat, drink or put on my skin, even if its “a little bit".
Before Lyme Disease, I used to be a very happy, hard working and energetic person. I loved going out with friends and I loved listening to music and going out dancing. I used to love trying new foods and drinks, even if I did not know what was in it, but now things are different. Very, very different and they will be for the rest of my life.
The last time I was able to go out to hear some music in a bar was 5 months ago. I have not really been able to go out dancing because my body aches and feels exhausted. My brain is so hypersensitive to lights and sounds that it flares with intense neurological symptoms and I feel like I want to pass out. That night was actually a “good day” for me and I wanted to go out and hear some music I like. You have no idea how much energy it took for me to stay up late and be able to come out for an hour and have my one cocktail.
I barely get to drink these days, but every now and then when I feel good I have a glass of wine or a simple cocktail. I was only having one drink that night so I wanted to make sure I enjoyed it and it was going to be safe for me to drink. I wanted to go out, have a good time, not be judged or made to feel like a pain in the a** for expressing my needs to stay healthy. I wanted to forget for a moment that I have been sick for 3 years and I wanted a glimpse of what its like to be normal again.
It's hard enough to have so much taken away from your life overnight from a bug bite, that I don’t need other people judging me and making me feel bad for it. I try to remain positive in light of all that has happened to me, but sometimes it's hard when I have interactions with people like I had with you the other night.
That “little bit” you seemed to brush off as no big deal can cause me so much harm.
First off I have over 60 food allergies thanks to Lyme Disease. Some are so serious that I carry an Epi-Pen and can go into anaphylactic shock, stop breathing and die. No one wants a cocktail to turn into a night at the emergency room. I ask the questions I ask to prevent situations like this from happening. Fortunately, I have not had to go to the emergency room for life-threatening allergies for a long time because I ask the right questions and because I don’t take chances drinking a drink with “a little bit” of something I am not sure what it is.
Second I have Celiac Disease, thanks to Lyme Disease which is an Autoimmune Disease that reacts to a microscopic amount of gluten. If I get glutened I will feel extremely sick for about 2 weeks and it will set my Lyme recovery back at least 2 months. That's a long time in the life of a Lymie and I am feeling so much better today from where I was 2 months ago that it would be horrific to have to back track to that and do it all over again. I have already been in really intense treatment for 1 year and am only 60-70% better. I have a ways to go and I don't want to drag this out any longer than it already is taking.
Furthermore, when I am exposed to even a microscopic crumb of gluten, my immune system will make antibodies for 6 months and I have been working so, so hard to reduce my antibodies and it has taken me 2.5 years to get half way down to a normal level and I still have a ways to go.
So when I ask to see the ingredients or the bottle, I am not being picky and difficult. I am looking to see if there is a chance it has gluten or if it's been made in a facility with wheat, because even that causes me to react. That's right, if something is made in a facility with wheat I can’t eat it, even if it does not have wheat in it and even if its labeled gluten free. My body is THAT sensitive and I have to take care of myself to avoid it at all costs. I can’t really eat anything that comes in a package and I can’t really eat out. Celiac Disease is a lifetime extreme sensitivity to gluten. This will never change for me, so I will always have to be on guard against it.
Did you know the food dye Blue #1 and Yellow #5 are common gluten ingredients and probably were in the “Lime” you wanted to put in my drink? If I went along with it and “drank that little bit” I am the one that would be suffering for 6 months because of it and you probably barely even remember how annoying it was to remake my drink in 30 seconds. Thats some new perspective isn’t it?
You were unable to tell me what brand Lime you used, but I did some research on the common “bar limes” and here are the ingredients in them. Everything listed in red is an ingredient that I can't have and will compromise my health.
So pretty much the only thing I can eat in there is Lime juice. I can’t have Corn Syrup or any grains for that matter. I can’t have preservatives like Sodium Metabisulfate and definitely can’t eat food dyes that most likely always have gluten. If the ingredients in your lime were the same as all the other ones I looked at, that little bit would have made me super sick.
I try to make it super easy for you and order gin & soda with lime so I don’t have to ask you about ingredients in other drinks or what brand you use for a mixer so I can google it to see if it's safe. I try to be conscious of how much of your time I am taking for my order, especially if your bar is busy, which it was not on that particular night. I was actually the only one ordering from you so the attitude was uncalled for.
Third is that having had a serious chronic illness for the past 3 years has been the hardest thing I have ever had to endure. I have been bedridden for weeks at a time and have been unable to work for close to a year due to my symptoms and time-consuming treatments. I try to go out every now and then to have a glimpse at what life is like when you are not sick. It helps to motivate me to keep fighting to get my life back. It reminds me that life can be awesome and that I need to get better to participate in it again. It reminds me that I love music and that music can still sound good to me when I feel good. It shows me that I can move my body a little bit and hopefully be able to dance all night again soon. It helps me keep fighting for my health, with a dream that I can one day be as close to normal as possible, though it will be a "new normal” once I heal.
You see I will always have my food allergies. I will always have Lyme. I will always be Celiac. I have learned to adapt to these new limitations and not let them stop me from living, but I need to be careful about what I drink and eat in order to keep healing and I would appreciate not being judged for something that is out of my control.
I will always have to ask these questions when I eat and drink out. When I order a cocktail I don’t necessarily want to talk to you all about my medical conditions and why I can’t drink that lime juice, but I will if you want to hear it. It hits a deep and vulnerable place inside of me when you roll your eyes and disregard my needs, which are life and death. I did not ask for these conditions and they are not a result of a bad decision I made. They are a result of a big bite that can happen to anyone, anywhere, including you. This is what life threw at me and now I have to be the strong person I am and learn to adapt.
You never know when the person standing on the other side of the bar is having a deep struggle inside. They may look fine on the outside, but behind that smile is a lot of pain. It hurts me to see the lack of compassion that some people show to each other and I feel that this experience in illness is giving me a new perspective to try and bring that awareness to people that are lacking it. And yes, that means you my dear.
So the next time you want to judge someone or get annoyed by their requests or questions, I ask you take a moment to pause and think about a few things.
The next time someone asks a lot of questions about the ingredients in their drink or asks you to remake it due to a questionable ingredient, don’t roll your eyes and act annoyed. You have no idea the internal pain and struggle that person might be feeling and you have no idea how “just a little bit” of that one ingredient could affect their health for months to come. They may not want to explain why they are asking so many questions. They may want to try and just be “normal” for a night, but need to ask a few questions for their health. Have some patience for the questions someone is asking and don’t make them feel bad for it. Chances are they already feel bad enough.
The next time you see a young person sitting in the seats reserved for disabled and old people on the bus, don’t judge them. They may actually need to be sitting there. They may be suffering from an invisible and debilitating illness and if they don’t sit for the ride and rest, they may not have the energy and strength to walk to their destination once they get off the bus. Don’t judge based on how someone looks on the outside.
The next time you see a young person park in the handicap spot at the grocery store, don’t judge and call them "fakers" for parking there. They may have a chronic invisible illness and today is a “good day” for them and they have an extra spoon (what is a spoon?) to get their grocery shopping done since they spent the other days this week in bed too sick to move. They may not have the energy to be able to do their shopping if they have to walk the entire parking lot. Have somecompassion for the path that someone else may be walking on.
I urge you to develop some patience, compassion and non-judgement for people, regardless of how they look on the outside. You never know when the tables will be reversed and you will be standing on the other side of the bar. Life can change very quickly. I hope you always lead a healthy and happy life and that you never have to experience what it's like to have an invisible illness, but I also hope that you take a moment to learn compassion and not jump to judgemental conclusions when someone opens up about their needs. You never know what is hiding behind someones smile.
Cheers to compassion and heath, Erika
If you want to learn more about what Lyme is and my story for the past 3 years you can check out my coming out post.