Don't call me patient only!

To be honest, there are some words which make me nuts. They  feature on my personal Bullshit - Bingo List.

Do you have one too?

These words offend me, make me angry, and sometimes I can’t believe that people don’t understand the meaning correctly and avoid it as a consequence. Because these words have a direct negative impact on my life with MS. They stress me out and reduce me to a level which is not acceptable. They put me in a box. This box is called “patient”.

For many people, being a ”Patient” means to be a poor, pitiful thing which needs a lot of "wise" words, advice which is more a slap in the face than helpful and some "friendly" phrases like "Oh but you don't look sick“ or „Oh, you are sick you  should not do this or that!“ or, „No, I do this for you, you can’t do it!“, when they want to make my decision.

„Patient“ is like a stalker and sometimes it feels that I am not able to escape.

Patient is discriminating, disgusting and an absolute waste. It needs to be in the litterbox of words. It is an absolute negative feeling to be called a patient,  especially when you don't feel like one. 

And of course, there are these days without this patient feeling. You feel fine, you can do your job or work or household, and you feel fine. Everything is normal. Or as normal as it can be when you live with a chronic disease. These days exist and we deserve these good, fab days.

Sometimes I ask myself if the people are aware of the degrading meaning of the word "Patient". To be honest, I am a patient if there is a relapse  or if I have to check something with my doctor. But I am definitely not a Patient all day, every day.

By the way: Patient is not my Job. Patient is not Birgit. Birgit is not a Patient.

First of all, I am a woman, wife, cat mom, passionate knitter, music lover, book addict. I love to cook and to bake, I love to be in a Bavarian beer garden in summer and visit Christmas markets in winter. I am in love with the best husband ever. But I am not a Patient. I am a social media and digital health Expert, Journalist and speaker by profession. But I am not a Patient. 

I 've also often experienced, that to be called as patient in a professional setting, makes you lose jobs or drags people with MS to a lower level than all others. Reason? They will not be able to deliver. They say. Sorry? Really? The consequence: People with MS have to show more power and more performance to be accepted. Do you know how this feels? To be challenged so much?

This requires power, more power than necessary.  If our competence, our education and experience would be accepted as if we were „normal“ or „healthy“ people, there would be no need to push ourselves that much.

This additional effort reduces the quality of live. There is a lot of anxiety for our health, future and life.

Because you need so much energy to be there, to be perfect. And you can't be perfect. By the way: Nobody is perfect. No matter if we talk about a healthy person or a person living with a disease. And if you are not able to give 100% every day it can happen that the job will be downgraded or lost. Less money, less quality of life, more sorrows and concerns, more depression, more social isolation.

Here we are: to be called a patient means to live in a reduced life sometimes. You are this person living with this disease every day. So you are a patient. No matter if this is the current status  or not. And this means very often that you are out. Out of the society, of friendships, of jobs, of life.

On the other hand: It is very trendy to have a "Patient" in your network. It's chic. I noticed that to know a real patient is a very good thing, you can use it to generate maybe a project or also to start something new. Especially when you work in different health sectors ...

Do we need this? Or is it possible to see us as Human Beings, who we are first and foremost?

Birgit
Woman living with MS! Not Patient! 


Text: Birgit Bauer
Picture: Pixabay.com