5 ways to begin advocating in real life
What do we want? Change.
How do we get it? Education.
When do we want it? Now.
The allergy presence on the internet is remarkable. People sharing their stories in different ways but with the same motive: education. Knowledge is power. One of my favourite quotes is, “when you know better, you do better.” Unless I seek out the information I will never do better. Whilst I think speaking and informing people on the internet is incredible (I spend most of my daily life doing it), it just doesn’t have has much of an impact in my day-to-day life or as much as I would like it to. When I think back to life when I was a child and what people knew about allergies versus now, there is a remarkable difference. That difference is because people are spreading their messages high and wide, advocating for real change, in the real world and never stopping the fight for equality and educating about allergies. However, one thing I am noticing, is that most people tend to only speak up when it is online and not in real life. This is the case, not only in allergies but in a lot of topics. Race, disability, climate change and so on… I have been saying recently, that I “preach to the converted”. Most people that read this blog and follow me on Instagram, are already interested in allergies and are already doing the work to educate themselves.
When I go off of my phone or I am not writing a blog, I get the same comments or questions that I have gotten my whole life; “it must be so hard having all of those allergies.” “I couldn’t do it.” “It’s not like I am touching you.” If I want to make more of an impact and change the way the world views people with allergies, I have to do it in real life - not just online - and I want you to do it with me. However, this is easier said than done. When in the moment, these comments, questions can make me feel shocked, sad, angry and can cause me to be on the defensive; and I won’t educate anyone if I take that approach. I will tell you my 5 top tips for getting better at advocating and how you can start today! These tips will not only help with advocating about allergies but pretty much anything, where it is hard to stand up and fight in the moment.
First, what is advocacy, and what are the types?
An advocate is “a person who pleads a cause, or who speaks or writes in support of something.” That is why we are advocates even behind our technology, but what are the different types?
There are 3 types of advocating:
1. Self-advocacy: This is where you advocate for you. This has been the hardest one for me. I am good at showing up for my friends, family and getting the justice they deserve. I do, however, find it hard to do it for me. Most of the time I am on my own, so getting better at this has helped me grow stronger in my advocacy everywhere else. One of my favourite quotes is “The person that you will be with forever is yourself.” You can NEVER not be with yourself so, why not make the world better for you to live in. Once I figured that out I couldn’t stop self-advocating. I deserve the same rights as everybody else, and if nobody else is around, why shouldn’t I be the one to stand up for me. It is hard, trust me, and exhausting but it will make you feel strong, empowered and safer.
2. Individual advocacy: This involves being able to support other people and providing assistance to them. As I mentioned above, I find I can do this far more easily than self-advocating. There are a few reasons why… One, I feel safer in numbers and having someone beside me gives me more of a voice and I have someone to back me up. Two, I don’t have a personal stake in the outcome. I can care about the outcome and want it to succeed for them but my personal life probably won’t be affected. Most of all, I don’t have to worry about my personal shame/embarrassment. I find I do this online a lot. I am really good at advocating for others, through this blog, Instagram, emails, which is great and that is why I love to do this. We, especially me, have to do this work in the real world too. Advocating for others starts with yourself. These are kind of like steps to advocacy. You start with you, once you feel comfortable, you reach out to help others and then the final step, the step that incites the most change is advocating within the system.
3. Systems advocacy: This is where we change the system. Change the way it has always been done, on the inside. This is life-changing on a monumental scale, but it takes time, money, energy and dedication. Everything has a system, policy and practice; to change those takes work. It is not an overnight success or a momentary relief, it is strength in numbers. Since I was diagnosed with allergies, the system has changed for the better, but it is not even close to where it should be. The allergy community has a lot of charities, organisations, and companies that are changing our world for the better and making it safer, but I have had my allergies for close to 28 years now and, whilst the change is amazing, I can still see a divide in education, resources and safety - even in my own allergy world. Advocacy here can make the most change for a lot of people but doing what you can in your everyday life will help these systems immensely because they won’t have to educate first.
5 ways to advocate in real life (TODAY)
*Disclaimer: There are times when you won’t want to advocate, and that is okay. You don’t have to fight all the time and educate others. Advocating is for you so that you feel safe in this world; where we often find ourselves scared for our lives. The days where you feel tired, drained, knocked down, please take time off. Just know that what you are doing is not only helping you but so many other people out there; you may not see it, but you are; that’s what keeps me going too.
Speak up in the most mundane situations
bus - train - meeting - dinner table - pub - picnic - school - university - cafeteria - lounge - aeroplane - party
We may think that asking someone to not eat our allergen on a bus is trivial and it will only cause you embarrassment and them frustration, and whilst that may be true, the other way to think about it is, you are educating somebody in a “real” moment. I have so many stories, where I asked a person next to me if they either could stop eating the nuts or not to start. It is scary, and vulnerable starting that conversation, but I look at it like, you are not only doing this for you but, somebody else, somebody who probably won’t speak up when they are faced with a similar situation.
I have gotten some mixed responses from people. Most were very lovely and even asked me questions. One woman said that she thought about not opening them because her friend’s granddaughter had an allergy to nuts. Some others were not so pleasant, telling me that “if it bothered me so much, I should leave, move, suck it up”… But speaking up is never a mistake in my book. I think of the ways it could go right; those odds are worth it to me.
These are strangers, people you will never see again. It can be easier to speak up when you know it is just for one minute of your life. What do you do with people who are strangers but you see them often? University mates, colleagues, local bartender, partners’ friends, their parents… this is tricky. They don’t know you well enough but, they also have been around you a lot that they need to know the deal. This is where banter and casual remarks come in handy. “Oh hey, please can you not bring X to the party? I’d hate it if the ambulance were to bust up the party…” “That looks so good, I wish I could have it but I can’t be within 2 feet of X or I will be Y, keep that away for both of our sakes.” “Think of my allergies like the coronavirus.”
You are thinking now “cool Lindi, all’s well and good, but I am having trouble standing up to the people in my life who I love the most. They just aren’t getting it, and they make silly remarks and think I am overreacting. What do I do then? I don’t want to push the people in my life away, but I want them to understand.”
I completely get it, the fake person I made up, I have been there (sometimes I still am). The one thing that consistently works for me is boundaries. Boundaries are my saving grace. Everyone has boundaries, even if you don’t know what they are; but if you know them, they can be the most amazing tool in your toolbox.
Set yourself some boundaries (and be okay with them)
Setting boundaries is not only going to benefit you with your allergies, it will benefit you in every walks of life. Society has boundaries and laws, to keep order in the world. When people push the boundaries or altogether disregard them, there are consequences. We hear boundaries come up with children a lot. Children love to push boundaries, so they can gauge what is acceptable and what isn't, they are learning. As we grow up, we learn to have our own personal boundaries. Our boundaries are our personal laws. They are laws we set within ourselves and when people break those laws, there are consequences.
I will give you a few of my boundaries now, but just know that these boundaries have come out of a lot of trial and error. My boundaries ebb and flow like I do, once I get more information I grow and evolve, but having boundaries allows me to respect myself, and most importantly, others know that I respect myself.
My (allergy) boundaries:
If I ask you not to eat something (due to my allergies) and you refuse, I will leave.
I will not tolerate anyone making comments about me being a burden (even if I am not there).
I don’t speak negatively to myself, so you won’t either.
Honesty is crucial in my life, if you’ve been asked a direct question, give me a direct answer - don’t lie.
Don’t be too proud to apologise, even if your intent wasn’t to cause pain.
No one will make me feel guilty for not eating, and no one can force me to eat.
I say no when I want to.
I read the ingredients. EVERY. TIME. No excuses.
These are only a few. In my life now, they rarely come up, but that is because I have implemented them for so long that the people in my life don’t even test them. They respect me too much for that, and I wouldn't let them. I have boundaries in my romantic life, physical boundaries, emotional and spiritual ones. I don’t have to activate my boundaries on a daily basis, but knowing they are there gives me control and I respect myself too much to let anyone cross them, again. Most boundaries come about because of personal experiences that you don’t want to be repeated again. Others you can see from other people and you think, that is something I won’t tolerate (for example: fighting in the street - that’s one of my romantic ones).
Other types of boundaries:
Go to bed at 9 pm.
Not working on the weekends.
Not being available to everyone 24/7
Refusing to let anyone be rude to you (and I mean anyone)
Taking care of your physical, mental and spiritual needs.
These may seem quite “harsh” “mean” “not allowing for different circumstances or people”. I thought that too when I discovered boundary setting but, when I execute my boundaries, it never comes from an angry place. I use calm tones and explain that they are crossing my boundary. Then they have the option to keep crossing it or understand and retract their behaviour. Having boundaries means you are in control about how you wish others to treat you. You can put in place your boundary if you feel that it is necessary for your wellbeing and that all comes down to self-confidence.
Build up self-confidence
Unless you are lucky, this one comes with age I’m afraid. Self-confidence comes from experiences, understanding who you are, what you want out of life, and how you want to show up. Self-confidence is not a straight line. It can be really strong in one part of your life and weak in another. It can depend on your personality type and also the season of life you are in. What I have found is that my self-confidence comes when I am doing the things I want to do, not the things I ‘should’ do. Even waking up in the morning at the time I want to, exercising, and eating healthily, all create my self-confidence because I trust that when I set my mind to something, I can get it done. I have a lot of self-confidence when I write. I go into a flow state, my energy is sparked, and I come out of a writing session truly confident within myself. Self-confidence is triggered differently for everyone, but to self-advocate we need it. It is so much harder to stand up to people when you don't feel confident in your own body, mind & spirit.
3 ways to build self-confidence:
Start the day with things you know you are good at. (Spirit)
Listen to music, podcasts, audiobooks, & read what helps you feel motivated (Mind)
Move your body in any way you want. It doesn’t have to be sweaty, bendy, or even painful - it just has to be enjoyable (Body)
Start with those three things every day and tell me that you don’t feel more confident after?! But now, what do you do with all that self-confidence? You need to use it!
Make up a script
Now I know that all of those things were great, but you might be thinking again: “okay Lindi, cool, but what can I do today that will have an impact? I will try to speak up, I will write my list of boundaries, I will implement the three ways to get self-confidence but when I am at work and my colleague says ‘too bad, why don’t you just sit over there?’ Or ‘sucks to be you’ what do I do? or when my friend says “we are all going out for Asian food tonight, I didn’t think you would come but they said to invite you anyway.” What do I say?”
Such a good point, the fake person I made up (I’ll call you Rose). Good point Rose, it is very hurtful when people do put you down and make you feel like you are a nuisance. One of the best things I have found is to memorise a script. When I am faced with a situation I wasn’t prepared for, I freeze. I don’t know what to say, I lose any clout of confidence I had, and I panic. This is why I started to devise scripts for certain situations. I used to make them up in my head, but when you are caught off guard it is hard to remember, I find writing them down I am more likely to remember them. (I cannot take all of the credit, my Mum and I used to role-play certain situations so I knew what to do. I have never been peer pressured since I could speak nobody has ever made me do something I didn’t want to do - Thank you, Mama)
Some of my scripts:
“What do you even eat?” - Luckily, I don’t see my allergies as deprivation. I am fortunate that because of my allergies I understand nutrition more than most and I get a range of amazing foods in my diet. I am grateful for that.
“It’s not like I am going to kiss you!” - I appreciate that for you this doesn’t seem like a big deal. However, every time I am around my allergen I have heightened anxiety. I hope you can understand that while it’s just a few minutes of your life, and one snack throughout your day, my day will be significantly scarier because of it. If you will eat that I will have to leave this conversation…
“You are getting really boring, you never come out to eat with us anymore.” - It does suck that we haven’t hung out for a while. I miss you too. Unfortunately, I would rather be boring than scared. Perhaps we can do something else that doesn’t involve food next time! Or you can come over and I can cook you a meal which I would feel safe eating.
“ I made it for you and now you don’t want to eat it.” - I appreciate your effort so much. My allergy fears come when I least expecting them, but I have to trust my intuition and I don’t feel comfortable at this moment, I hope you can see that it isn’t personal.
“I could never live like you” - I hope you never will. However, that statement makes me feel different, broken, abnormal. We all are given different circumstances and comparing me to a “normal” person like you doesn’t make me feel good. We handle what we are given, I was given allergies, and I handle them quite well if I do say so myself.
One thing I never do is apologise. If you can see my scripts that is one thing is left out. I don’t apologise because there is nothing for me to feel bad about. Say sorry to these comments makes me feel like I am in the wrong, I want my apology to be saved for something I truly feel badly about.
I was thinking that maybe I am the only one that these comments happen to, and perhaps this whole blog would be for nothing so, I asked a question on my Instagram stories about some comments that they hear to get that it is a constant battle. We are consistently having to educate, inform, advocate and sometimes we just want a break. It is hard to see why people make such comments from our position, but I do understand. I probably have said comments like these to other people who face different circumstances, because I did not know what to say or how to ask the right questions. We need to come at this with kindness and compassion, on both sides.
Comments to the allergy community:
When I say I am allergic to dairy: “Oh, you can have this, it doesn’t have egg in” or “I’ll get you the vegan menu.”
When I say I have anaphylaxis: “Do you just get hives?”
“It must be a nightmare for you to do a food shop.”
“Can he have this?” About foods, they’ve already seen them eat.
“Just eat it!”
“Just try a bite, it might be better now.”
Food that is made in butter: “Yes, it's dairy-free.”
When I say I am allergic to dairy: “Oh, you’re lactose intolerant!”
“Don’t you wish your parents had gotten rid of them for you?” Or “Are you mad that your parents didn’t get you treatment when you were younger?”
“Just a little bit won’t hurt, surely”
“OMG, so you basically can’t eat ANYTHING?”
“How allergic ARE you to peanuts?”
Asking for advice to allergy reactors, who are not qualified about their own circumstances. “What do you think? Will he have these allergies forever?”
“Do you have to read the packet?”
“It probably doesn’t have nuts in.”
“How can you be allergic to chickpeas but not PEAS!”
“You are allergic to EVERYTHING!”
When I am reacting: “You’ll be fine!”
“You cannot be anaphylactic to milk!”
“Wait, so what CAN you eat?”
As you can see there are a lot of overlapping comments that people get. These comments aren’t just one time, it is over a period of time throughout our lives. I want to make it clear: I am not saying that I do not welcome comments, inquisitive questions, safety precautions… however, these need to come with compassion, empathy; not judgement, shock, negativity; which happens most of the time. Now, this part is for the allergy community. We are tired, bored, frustrated, scared, sad, emotional and more, but what doesn’t help is stopping the conversation because of these. “The outcome is 50% the event and 50% our reaction.” We cannot control the comments that people say about our allergies, but we can control how we respond to them. Responding to them with humility, grace, engagement will allow the conversation to move on, and open it up, so that hopefully there will be one less person who will say these comments, in the word. Unfortunately, we cannot get through to everyone, and we will find ourselves once again, tired, bored, frustrated, scared, sad, emotional and more and, when that happens, we can fill our cup once again by talking to people who understand our stories. Our allergy family.
The. Most. Important. Thing. I have found since starting my Instagram platform and the blog is: allies. The allergy community. The allergy army. An ally is defined as “a person or organisation that cooperates with or helps another in a particular activity.” Finding this community of strong allergy reactors in the same place, fighting for what I am fighting for, is incredible. A lot of people share in my story that, we grew up as the “allergy kid”, the different one, ‘special’, the one who had to bring their own food, couldn’t share a drink, had special medication and so on… but since I have been talking to other people who share my story, I feel stronger, braver, and proud to have these allergies. A one on one fight is a duel, but when you have an army behind you, it's a war. We are fighting so that generations to come will never feel the isolation and fear we felt. We are fighting so that we can be a sounding board for when others have a tough day in the trenches. A family’s love is unconditional, we have been through it, we share the same scars and battle wounds, but we keep getting up, we keep fighting, we keep facing death; day in, day out. We leave no reactor behind. That is what makes us a force to be reckoned with. Fight every day through words of kindness, strength and education; if we can get through to them, we will look back one day and see, that we don’t have to fight anymore, the whole world will be on our side; I think that is so much better than pushing people away because they don’t have the knowledge yet.
5 ways (without all the chat):
Speak up in mundane situations
Build up self-confidence
Make up scripts
Seek your allies
Links to some advocates to help you along your journey.
Epi-Centre (If you use the code “TABLE30” you can get a month off of the app - if you are ordering out of the USA)
The Allergic living Magazine (sign up for this!!)
I love learning new ways to do things, I am not perfect, I have such a long way to go, but I have a fire inside of me to educate others on the person behind the allergy. We are not stats, we are not our allergies, we are humans.