Advocating For Your Health

The Covid-19 pandemic has forced the subject of health to the forefront. Who is more susceptible to severe symptoms? Can vitamin D levels predict how well a person will fight off the virus? What can help to prevent the spread? And possibly most importantly, can earlier intervention prevent longer term effects?

Health is something that has always been a topic of interest for some and it will continue to be long after Covid-19. However, it is during times of increased health risk that health is something we all seem to have an opinion on or interest in, and for good reason. It is especially of interest to those people who have been more severely affected, whom have pre-existing conditions and the growing number of people who are experiencing what the media describes as "Long Covid".

So, what are we supposed to do about it?

As a health coach, I work with people who have long term health conditions to find ways to manage their day to day, to find ways to cope, and also to advocate for themselves. As stated on the Disability Rights UK website, "Self-advocacy is the ability to speak-up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Self-advocacy means you know your rights and responsibilities, you speak-up for your rights, and you are able to make choices and decisions that affect your life." This is not limited to people with disabilities, but for anyone who has a need of some sort. In this context, it is about your health.

Self-advocasy can be incredibly daunting, especially if a person has never had to do it. Consider the person who has had no prior experience of health problems and then suddenly develops Long-Covid. Symptoms such as extreme fatigue, breathlessness, joint pain and rashes - to go from a life free of health complaints to one where these health complaints take over their lives is a whirlwind: a change in identity, in ability, in routine, and a desperation to figure out what is going on. How does a person simultaneously manage their symptoms, try and continue with some kind of normality and also demand attention from healthcare professionals? It might sound simple enough to someone who isn't experiencing these issues but to the person who is, it can be incredibly difficult and overwhelming.

According to Carl Jung (1959) all humans have an "actualising tendency", which means that we all have a motive to grow and to fulfil their potential. It makes sense; just look at business owners, athletes and homemakers; they all share something in common, which is to do better. They all strive to be the best they can be, and then some. When it comes to people with health issues, this actualising tendency can become blocked. The person wants to do well, wants to achieve their potential, but their health issues hold them back in various ways. Fatigue leads to less productivity at work (or being unable to work), less capacity to socialise, and less capacity to take care of themselves. When this happens, it is commonplace to develop low mood and anxiety as a result of being able to see what they want to achieve, but struggle to do so. This is where self-advocasy comes in and shows itself to be what it truly is: a survival instinct.

Have you ever visited your doctor and told them of a health problem you were experiencing? 10 minutes to explain your issue, be understood, checked over and get a medication or referral to the correct service. How often does this go the way you want it to? Unfortunately for people with ling term health conditions, the reality is not very often. A study published in The New England Journal of Medicine found that "women are seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack". There is a plethora of research coming out that women tend to be dismissed and have their symptoms played down by doctors, and interestingly women are more likely to suffer from autoimmune conditions and longer term symptoms. As long term conditions become ever more commonplace in modern health, self advocacy is more important than ever.

So, how do you advocate for your own health?

You need to get comfortable with conflict and be confident in asking for what you need and want. Doctors have a lot of knowledge, but you are the only person who knows your body. You have to be prepared to get it wrong, to be disagreed with and to assert yourself. You have to be prepared to disagree with your healthcare provider and tell them what you think is best. It is a conversation about your health and you are the one who has to live with it. You don't need to be argumentative, but you do have to be firm.

You need to ask for appointments. There's no appointments for the next month, two months? Depending on the extent of your symptoms, you need to decide whether you can realistically wait and if not, you need to tell them that and have a good reason why. Is it affecting your mental health? Is it affecting your ability to work? Is it causing problems in your life beyond minimal interference? Then tell them.

You need to be persistent. So you've had an appointment and you got your referral or medication, now what? You need to keep an open dialogue with your doctor; is the medication working or not, do you need follow up tests, do you need a second opinion, do you need further appointments? Don't be afraid to take up time; if they don't have time they will tell you, but more often than not if the concern is great enough you will get some kind of resolution.

You need to be strategic and know your facts. Research your symptoms and conditions (and I don't mean to scare yourself) and join online communities that share the same issues. You can speak to people who are going through the same things and find out what tests, diagnosis and medication they were given. It doesn't always mean you have the same thing or that your treatment plan will look the same, but it gives you an idea.

And finally, advocate to yourself as well. You are going through something that is causing pain and distress and that means you need to give yourself a break. Advocating for your health can be exhausting and you need to know when it's time to rest and when it's time to act. Pick your battles and be kind to yourself, because you don't want to burn yourself out in the process.

It takes time and you won’t always get it right because it is a process and you are new to. Even if you’re not entirely new to it, it can be tempting to give up if you feel like you aren’t getting anywhere, but you need to take notice of the small achievements. If you keep speaking up, eventually someone will hear you and that might be the person who you can trust. There may never be an exclusive answer or cure, but everybody has a unique biology and through a combination of self-advocasy, self-care and self-acceptance you can find ways of managing your health and living a life that allows for your needs.

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