12 Mai 2022

The economical stigma when living with a disease and being an expert!

by Birgit Bauer 

A while ago I found and shared that article in my social media channels. It discusses how words can stigmatize people living with illnesses and / or disabilities. It says, that there is a stigma in wording what shouldn’t be. https://www.readersdigest.co.uk/inspire/life/the-way-we-talk-about-disability-matters

Once you become a patient, very often you lose your identity as a person for others. You become a case or a number, especially in hospitals etc. Being a “patient” can be very stigmatizing in general. Because if it has been said once, people start to think very different and very often you are packed in a box of misconceptions and prejudices. The diagnose of a disease changes a lot in the life and the professional life of a person, it’s challenging to let people know that you are still there, the person not defined by a disease. There are many words stigmatizing people, but stigma is much more. 

Also in an economical way ... 


I am a social entrepreneur, expert for digital health and social media, specialized on patient communication with more than 17 years’ experience and a lot of continuing education and specialization. As a consultant I have created social media strategies, did a lot of research, published papers and worked as speaker and journalist. I am seen as expert in my field and – I am proud about this – appreciated across Europe. Therefore, I think you will agree, it is ok to say that I expect to be paid as an expert no matter if I am living with MS or not. 


Besides my professional activities I am an very altruistic person. If someone asks for support I help if possible. This can be a patient group or a charity organisation, or voluntary organisation doing a valuable project for the patient community. As I am living with MS and I know how difficult things are and how valuable a professional advice or idea can be for an organisation. They work as a non-for-profit for others to support them. It’s absolutely worth to do it. 


So, it is known, that I am living with MS. And why should I hide that? Should I hide it? 

After a lot of discussion with other people living with diseases being an entrepreneur like me noticing, that this is not a single event, I guess I should have done it, because the fact, that I have MS moves me into an economical stigma. Especially when I am doing my job. Because it is very often expected, that I work for free. Why? 

It can happen from time to time, that people living with diseases just seen as patients, not as individual, or as human. (Here is the stigma!) That means, that their expertise is great for others, but their fee not. Not for all to clear that, but for some people the name "patient" means to some people that a person works for free or they start to negotiate a rate or to give a limit in the honorarium to the expert although he or she does the same job as a healthy person does. 


In the words of this people: They’d love me to see me speaking, because they appreciate my work so much and I am a real expert. 

They sweet-talk to convince me to do the job and give a full service for free, because I am a patient, that's one of the arguments. By the way, the participants of course have to pay a fee once they register. 

If I start to ask why I should work for free or with a reduced rate the budget is always tight, limited and the rules don't allow to pay me, the patient. Although I was asked as expert. 


Working for free would mean that I give a profit orientated company or a big organization with enough sponsors and money in their back, a financial advantage. Well, I am not a social service department or a very rich person. I need to earn money to pay my bills and to support a company making profit with the business, financially is not my job. 

The next argument then is that the team has to think economically. Surprisingly, they let me know, that they have to pay bills and their staff wants to have their monthly salary too. Honestly: understandable but not helpful. As a company owner, I understand that completely and here are the “news”: I have to pay bills too, those for the business and my own private bills.


And this is the economic stigma: 

Only the fact that I live with MS leads teams to doubt my fee sometimes. I am not alone with that phenomenon. As an entrepreneur I have to make sure that my company can meet its financial obligations. Apart from the fact, that “healthy” experts which whom I am on the same level in terms of education, expertise and subject area, rarely have to justify their fee. 

I have experienced that. I was paid as expert and as patient. The payment for the expert was totally fine. No negotiations, booked and paid. The status as “patient” was used to argue reduce my honorarium. 


Here is the stigma: Patient means reduced fees for some. 

The excuse for this is very often: it is about compliance. Really? Nope! 

But: It is fact, that a disease doesn’t define us as a person. We are educated, trained to do a professional job. We are expected to do this like other experts too. And of course, we do it. It is in our own interest. So why should we reduce our fee? 


To be disabled or living with a disease doesn’t mean to be unable.


All people are part of the economic world. No matter if living with a disease, disability or as healthy person. We are on the same level. Therefore, it is not fair from a profit orientated organisation to use the word “patient” as excuse or argument to reduce a honorarium or don’t pay it. Thank God, this happens not always. There are clients and partners paying for a service without mentioning a disease. This shows us how it should work. 


To stigmatize people in an economic way, because they live with a chronic disease or a disability is not acceptable. 

In a world where we discuss equality, fair payment and inclusion this should not happen. And by the way: patients shouldn’t be seen as a free resource in general.

If somebody doesn’t want to pay something, this must be mentioned and it could be asked if there is any other option to compensate a service.

I guess nobody is totally restrictive to say “No” when being asked. There is of course space for a discussion, but it must be fair and constructive. The wording makes the difference in a conversation and it is on the attitude of those who ask for a free service and also the way of respect and appreciation they show to the expert. 


But just to sweet-talk and to use “patient” as an argument to convince people to do something for free or accept a low fee is definitely to less. It is discriminating, exclusive and debasing someones expertise. And this is not fair. 

Would you work for free? Or could you work for free and pay your bills? 

Photo: Shutterstock, Pixabay.com

Text: Birgit Bauer, Manufaktur für Antworten UG