Youth advocacy is a rewarding journey. It's a path to make an impact in our communities and grow as individuals. In this article I share what I have learned from almost a decade of youth activism in healthcare.
I have been struggling with an eating disorder for the past few years. I am afraid to eat and afraid I will gain weight. The fear is unjustified as I was never overweight. I have weighed the same since I was 12 years old, and I am currently nearing my 25th birthday. Yet, when I see my reflection, I see somebody who is much larger than reality.
I told my therapist that I thought I was fat. She said it was 'body dysmorphia'.
She explained this as a mental health condition where a person is apprehensive about their appearance and suggested I visit a nutritionist. She also told me that this condition was associated with other anxiety disorders and eating disorders. I did not understand what she was saying as I was in denial; I had a problem, to begin with. I wanted a solution without having to address my issues.
Upon visiting my nutritionist, he conducted an in-body scan and told me my body weight was dangerously low.
I disagreed with him.
I felt he was speaking about a different person than the person I saw in the mirror. I felt like the elephant in the room- both literally and figuratively. He then made the simple but revolutionary suggestion to keep a food diary to track what I was eating.
This was a clever way for my nutritionist and me to be on the same page. By recording all my meals, drinks, and snacks, I was able to see what I was eating versus what I was supposed to be eating. Keeping a meal diary was a powerful and non-invasive way for my nutritionist to walk in my shoes for a specific time and understand my eating (and thinking) habits.
No other methodology would have allowed my nutritionist to capture so much contextual and behavioural information on my eating patterns other than a daily detailed food diary.
However, by using a paper and pen, I often forgot (or intentionally did not enter my food entries) as I felt guilty reading what I had eaten or that I had eaten at all.
I also did not have the visual flexibility to express myself through using photos, videos, voice recordings, and screen recordings. The usage of multiple media sources would have allowed my nutritionist to observe my behaviour in real-time and gain a holistic view of my physical and emotional needs.
I confessed to my therapist my deliberate dishonesty in completing the physical food diary and why I had been reluctant to participate in the exercise. My therapist then suggested to my nutritionist and me to transition to a mobile diary study.
Whilst I used a physical diary (paper and pen), a mobile diary study app would have helped my nutritionist and me reach a common ground (and to be on the same page) sooner rather than later.
As a millennial, I wanted to feel like journaling was as easy as Tweeting or posting a picture on Instagram. But at the same time, I wanted to know that the information I provided in a digital diary would be as safe and private as it would have been as my handwritten diary locked in my bedroom cabinet.
Further, a digital food diary study platform with push notifications would have served as a constant reminder to log in my food entries as I constantly check my phone. It would have also made the task of writing a food diary less momentous by transforming my journaling into micro-journaling by allowing me to enter one bite at a time rather than the whole day's worth of meals at once.
Mainly, the digital food diary could help collect the evidence that I was not the elephant in the room, but rather that the elephant in the room was my denied eating disorder.
The elephant in the room
Have you ever wanted to cure cancer, stop HIV, or offer quality health access to all people in need? In my seven years of medical studies, I have been asking myself similar questions. I was thinking about how I can create a lasting impact on people's health and well-being as a young person. Today after eight years of youth activism, I started finding some answers.
We as youth cannot fully cure cancer or HIV, but we can prevent and control them. We can offer people access to health awareness and essential services. We can, as youth, make people's health and lives better through youth engagement and advocacy. This article will share five steps to help you start your health advocacy journey.
Health advocacy can mean a strategy to increase familiarity with a health issue. It aims to influence the introduction, change, and implementation of policies that can bring solutions to these health issues and, as a result, increase access and quality of health services.
Advocacy aims to gain political commitment, policy support, social acceptance, and systems support for a particular public health goal or program. To engage in health advocacy as youth, we must be ready to interact and influence the general population and decision-makers to support the cause and change we are seeking.
Through advocacy, youth in Lithuania managed to increase the legal drinking age from 18 to 20. Youth in South Africa managed to increase their access to contraceptives. Healthcare students in multiple countries pushed for curriculum improvements to prepare to care for their populations' health. Now it is your turn to advocate and act for what matters for you.
In today's world, our societies are facing too many challenges. Health issues range from non-communicable diseases like diabetes and cancer to infectious diseases, mental health issues, health emergencies and pandemics, sexual and reproductive health issues, Antimicrobial Resistance, rural health and access to services, and many other problems.
A valuable lesson I learned is to choose your fights. If we want to make a substantial impact, we must focus on a specific cause or issue. It can be a local issue, such as slums residents in your area not having access to water and hygiene. It can also be a national problem like high level of Tobacco consumption by adolescents.
It is essential to start our advocacy journey by choosing the issue we want to tackle. A problem can come from a personal experience. I know of a colleague in South Africa who was infected by multidrug-resistant bacteria. She is today one of the world's leading patient advocates against Antimicrobial Resistance. I see many HIV-positive youth advocating for HIV prevention and treatment.
Advocacy is all about engaging others for your cause. There can be no better way to engage people than a personal story to which they can relate. Your advocacy journey can be long, and you need to have a strong passion for what you believe in and be ready to defend it vigorously.
Even if you didn't have a personal experience or issue in your immediate environment, you could still identify your cause differently. Check, for example, the list of the biggest global health problems in 2021, or search for the primary reasons for mortality in your country. You can also ask experts and the local population in your area to identify current issues. Interacting with the target population suffering from the problem is imperative to identify the specific problems and potential solutions. Once you have your primary cause identified, it is time to start preparing for your advocacy journey.
Failing to prepare is preparing to fail. Imagine yourself in a meeting with the ministry or university representatives. You share your recommendations for solutions, and they tell you how the current data advises against these solutions. Preparing your data and advocacy plan is the next step to decide between a successful and a failing advocacy campaign.
When preparing your plans, you want to understand the problem and population you are focusing on thoroughly. Make sure to interact with them, do field visits or at least do your research. You want to gather detailed information on the nature of the problem. These include its causes, the population itself, their living conditions, local cultural aspects, and other issues they may be facing. You can want to tackle teenage marriage and pregnancy problems and find out that the local community has no schools where kids can go. This lack of education can be causing less awareness and more free time for girls, which can promote teenage pregnancy.
Once you understand your problem and population, you should prepare and plan your perceived solution and recommendation. Try to look up similar situations in other countries and see how people tackled them. Search for best practices and policy recommendations, then try accommodating them to the local context. Ask experts and do consultations with the population itself. Assess what would work and what would be acceptable and implementable.
One important aspect is that advocacy usually focuses on policy and law creation, implementation, or change. It is essential to build your solution around this. It is also necessary to take field action yourself if you can as a start. Actions can include awareness campaigns for the population, social support, fundraising, field action to improve infrastructure, and other actions to help relieve the problem.
Working in the field will help you interact more with your target population and gain experience about the nature of the problem and how to solve it. It will give you legitimacy later on when interacting with decision-makers.
You cannot clap with one hand alone. To engage in an effective advocacy campaign, you need a team to work and collaborate to achieve your advocacy goals. Having a legal structure that can cover you will ease the paperwork and let you speak on behalf of an entity. From my youth engagement years, I learned that stakeholders tend to listen to organisations, groups, and entities more than individuals. If you are part of an organisation, things will go smoother for you; if not, you better join one.
Try to identify different existing organisations that are working on the issues you are trying to tackle. These can be local or national organisations or even international ones. Sometimes you can find a global organisation that doesn't have a chapter or members in your country. You have a chance to connect with them and lead the creation of a local branch.
The more global, old, and connected the organisation is, the more legitimate it is for decision-makers. Make sure to choose organisations that have similar values to yours, as you want your team and advocacy environment to be healthy and encouraging.
Suppose you aren't able to identify existing organisations working on your advocacy issue. In that case, you can connect with an organisation that serves your target population and convince them to advocate on the topic of concern. If not, it is time for you to take the lead and create your organisation. Making something new might seem scary, but it is doable and rewarding. Gather members who are ready to defend your cause and work together towards your advocacy goal.
When you have a team working with you, don't forget about capacity building and preparation. You want to make sure you are all familiar with the issue as well as the advocacy process. You can organise joint training sessions for yourselves to learn and be prepared. Team Building is another essential component you need to prioritise. You and your team must know each other, be familiar with each other's strengths and weaknesses, and be able to rely on each other.
Now that you have your issue identified, you know what solution and policy change to bring up. You have your team ready; it is time to proceed and contact relevant stakeholders. A stakeholder is a person or entity who has a relationship with or is affected by the issue you address. The aim is to connect with the proper stakeholder who can help you achieve your desired policy change and convince them to do so.
Firstly, you need to identify the existing stakeholders and prioritise them. The stakeholder map tool is an easy way that can help you do this. Once you list the main actors related to your issue, you sort them into a grid based on their level of interest in your cause and the level of power as a stakeholder. If you are trying to include mental health in the schools' education curriculum, then the ministries of health and education would be significant stakeholders to contact.
After identifying your key stakeholders and prioritising your main target ones, it is time to connect with them to present your advocacy case. A helpful tool to prepare is the elevator pitch. It stands for a short presentation of one minute or less that you can quickly present to stakeholders. In this pitch, you must explain your problem or issue, describe the solution or policy proposal, introduce yourself and the organisation, and ask for follow-up and next steps.
Many decision-makers won't give you much time when discussing, and you need to be concise and straight to the point in your conversation. Remember to explain why your problem is essential and urgent and why your policy proposal is efficient and effective.
Some stakeholders might be hard to reach. You must be ready to use different ways to connect with them. Write to them officially or by email. Try going to their offices and getting an appointment. Hunt for them in meetings and conferences. Another helpful way is to reach out to your allies and ask them to link you with those stakeholders. Your university professor, for example, might quickly get you in touch with people in the ministry or the UN office you are trying to reach.
Social media is another tool that can help you track and connect with stakeholders. Messaging them, tagging them in posts about the issue, and replying to their posts can help attract their attention to you. Your goal is to connect with your stakeholder, present your case, and ask for help implementing that policy change.
Speaking with the right stakeholder is a necessary action, but sometimes it is not enough. Advocacy campaigns may take time and effort to keep speaking up about your cause and pushing for the policy change. You aim to make your voice heard and showcase how crucial the issue is. You want more people to join your cause and put more pressure to reach that policy change.
You can use multiple tools to mobilise for your cause. Editorial letters or press releases are helpful to present your case and raise some awareness about it. You can run a social media campaign to mobilise the public. You can collect signatures for a petition. You can push for questions and discussions in parliament or other official spaces about your cause.
Make sure to check relevant advocacy tools and the ones you can implement in your national context. The plan is to keep the issue alive and create public awareness and interest in it. This creates more urgency for decision-makers to deal with it and implement a policy change.
Remember that policy change can take a long time. Advocacy is a long-term journey, so don't give up if you don't see positive results from the start. Just make sure you have your structured advocacy plan and keep mobilising for your cause. The beautiful thing about advocacy is that it allows you to create a long-lasting change in your society.
Advocacy is a long journey, yet a rewarding one. Remember that nobody is young to advocate for what matters. Advocacy needs energy and creativity, and that is what differentiates us as youth. So don't hesitate to take your first step today to be the next health advocate and speak up for what matters to you.
Cover image credit: UN Women/Ryan Brown - Flickr - CC BY-NC-ND 2.0.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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Dear Digital Diary,
I realized that there is an unquestionable comfort in being misunderstood. For to be understood, one must peel off all the emotional layers and be exposed.
This requires both vulnerability and strength. I guess by using a physical diary (a paper and a pen), I never felt like what I was saying was analyzed or judged. But I also never thought I was understood.
Paper does not talk back.Using a daily digital diary has required emotional strength. It has required the need to trust and the need to provide information to be helped and understood.
Using a daily diary has needed less time and effort than a physical diary as I am prompted to interact through mobile notifications. I also no longer relay information from memory, but rather the medical or personal insights I enter are real-time behaviours and experiences.
The interaction is more organic. I also must confess this technology has allowed me to see patterns in my behaviour that I would have otherwise never noticed. I trust that the data I enter is safe as it is password protected. I also trust that I am safe because my doctor and nutritionist can view my records in real-time.
Also, with the data entered being more objective and diverse through pictures and voice recordings, my treatment plan has been better suited to my needs.
No more elephants in this room