It’s Chronic and Complex

Jeffry Stijn Foundation

When it comes to the work of the foundation it’s all been about adding information about trauma and all its forms. Basic information about acute trauma, chronic trauma, complex trauma and covert trauma has been added to the site, and I’m slowely but surely adding the research and sources I have collected over the past decades to various pages. This way people will have access to the information, even if I haven’t written a patient-splainer about it yet. I’ve also been adding information about trauma disorders such as PTSD and cPTSD.

And of course, added one of my FAVORITE things – FAQs?! myths and misconceptions, this time about about trauma disorders. Don’t get me wrong, explaining about a lot of mental health and mental illness concepts is necessary and needed. But those are more like research articles, or reports. Writing about myths and misconceptions is passion; I get to answer all those things I have been asked hundreds of times in one place. And instead of repeating myself over and over, I can now just refer to the article itself.

It’s self-serving and satisfying, but I have noticed that patients themselves are particularly happy with these sections. They’ve been trying to explain certain things over and over too. And are just as tired of it, or frustrated by it, as I was.

Trauma, and trauma disorders are complex, and I’m not a doctor, just a patient. So I’m proud to introduce our first (Mental) Health Director, Dr. Fleur. She will be joining the Foundation to lend her expertise both as a medical professional and as a patient experience expert. Because people, just like most things in life, can be more than one thing; they’re complex.

Doing Business in Aruba is Chronically Complex

This week has also been a reminder that doing business in Aruba is chronically complex. Whether it’s about trying to find answers to very basic questions, such as “please confirm that Aruba has no laws and regulations when it comes to service animals” to being underestimated chronically as a starting foundation.

Whether it’s about arranging for an external accountant in order to verify annual financial and fiscal reports (oh, we underestimated the complexity of your organization. We assumed you were ‘just’ a start-up foundation. We’ll get back to you), arranging proxies and post-nuptial agreements in order to safeguard the legal position of the foundation, separately from me as a person (well, that’s a different situation from normal, we’ll have to re-examine our initial advice) or funding (wait, you are able to answer a lot of our questions from the get-go, let’s reconsider our initial position and find a way to work together).

I’m a Consummate Professional, which Apparently is Chronically Complex

Yes I am the founder of a non-profit Foundation, but I am also a business woman. That means that when it comes to things like legal structure, administration, company policies, risk assessment, financial and fiscal responsibility, social responsibility in business, pretty much all facets of business and organization, I’m pretty well versed.

I still need specialists to advise or execute certain functions, but I am very aware of my limitations, and what I can do independently, versus whether I SHOULD do it independently.

What makes this chronically complex? Firstly I don’t have the degrees, despite having the knowledge and experience. I have studied business and organization, and project management (even at a Master’s level) from high school to this day. That my illness prevented me from finishing degrees, does not mean I didn’t excel, nor that I didn’t actually finish all the course requirements independently.

Plus I’ve been lucky enough to be able to put my know-how into practice in my jobs, volunteer work and personal life. AND I have been mentored by some exceptional people.

That’s chronically complex, because when I am faced with experts or professionals, they assume I’m ‘just’ someone who had an idea in passing and is putting it into practice in a bumbling, amateurish way. They usually come back from that stance rather quickly. And now-a-days most people don’t try and ‘test’ my knowledge or capabilities by asking leading questions, but just out-right ask if I know what I’m doing. Or if I need help. That simplifies things greatly for me, and I love those direct forms of communication.

Secondly I have cPTSD. And one of the biggest myths about trauma disorders is that it automatically means we cannot deal with stress. Therefore we are somehow incapable of being professional. No. As long as I have the necessary facilities to manage my disease, I’m perfectly capable of doing my job.

Having a disability means dealing with limitations, but does not limit us as people or professionals

Someone in a wheelchair needs a ramp to be able to get into their work, needs a wheel-chair accessible toilet, a desk and computer that accommodate the wheelchair. Once those things are in place, they can function just as well as anyone else. Maybe even better, because they have found a way to live within their limitations, without limiting themselves.

Living with a mental illness is no different. From my first interview with all my previous employers I have been very clear about what my mental illness entails, and what I need to be able to function. In the Netherlands this was just a matter of course. Here on Aruba, despite knowing from day 1 exactly what my illness entailed and what I needed to function, most employers did not provide the promised accommodations I needed to function.

In actual fact, because I could handle stress and crisis so well professionally, most employers assumed I could therefore not actually be mentally ill. This kind of high-functioning mental illness has its perks, but also its downfalls.

So now that I have started for myself, that obstacle is gone. Starting a commercial business, foundation, co-founding Human Rights Activists Aruba and writing as Just Julie is peanuts compared to work I did in the past.

It’s chronic and complex being a generalist in societies that revere specialists

And this brings me to my final ‘it’s chronic and complex’ when it comes to being a mental health patient and a professional: I’m a generalist, not a specialist. I like working in multi-disciplinary fields. It’s not complex to me at all. This surprises some people. I am constantly being asked things like:

Who does your website?
Who does your SEO?
Who handles your social media?
Who wrote your project proposal?
Who designed your logo?
Who writes your content?
Who prepared this proposed budget or these projected costs?
Who decided on your legal and fiscal structure?
Who wrote your tender and grant proposals?
Who wrote this salary, fees and compensations policy?

Well, me.

I do get advice from my council of sages or experts on details when necessary. I haven’t looked up or analyzed a law or regulation in years. So if someone can provide an answer as to what the latest changes in law have been and which regulations have changed, I’m perfectly happy to use their input versus doing that work myself.

That’s what they’re there for. I’m not a specialist, I’m ‘just’ a manager. Who happens to have a lot of practical experience, know-how and skills.

And once everything has been set-up and people have been found to take over my executive functions, I’ll be more than happy to be a patient experience director and contributor for the foundation. To me that’s simple.

To outsiders it’s strange that someone like me is starting foundations and businesses with the idea that others will take over, or become responsible for executive management. They don’t understand why I am making decisions now, which will guarantee the existence of the foundation regardless of whether I am at its helm. To most people starting your own company or foundation is a way to be in control. For me it’s a way to facilitate me as a person and as a professional, while also using my passion to improve the quality of life not just for myself, but others like me.

It’s chronically complex to be a mental health patient with a disorder caused by chronic and complex trauma

Yep. It’s so complex even mental health care professionals don’t know what to do. Which is why I’m being sent abroad for treatment. Which is complex because the organizations involved have never been faced with someone like me, with my needs, my background, who is setting a precedent when it comes to recovery from chronic an complex trauma in a small community with limited resources like Aruba.

And this past week I was finally able to lodge a formal complaint about how the past 5 years have been handled when it comes to professional help from Respaldo, our national mental health foundation in Aruba. The current status: my case is so complex, and my complaints about the organization so chronic, that outside expertise will be sought to handle my complaint. So just like my treatment, which will take place outside of the organization tasked with providing mental health care to Arubans, my complaint will also not be handled by Respaldo, but by outside complaint mediation.

This means that my complaint won’t be handled within the set term, but at least it will be handled professionally and by someone who does possess knowledge about complex trauma and complex cases. Which, honestly, is more than I expected, and has given me back a bit of faith.

It’s actually not really that complex

The thing is, I’m not really complex or unique except in one way. I haven’t hidden my illness or needs. I haven’t hidden the severity or impact. But most everyone I know, who suffers as I do, who is faced with daily struggles and discrimination as I do, who faces trivialization, gas-lighting and scapegoating, and a whole plethora of triggering behaviors, because it is rampant in our culture, is not open about their mental health or mental illness.

And that is their right. They have to protect themselves first and foremost. But it is chronically complex to be seen as an outlier, when in reality I am not. At all. I’m just a regular Julie.