Coming out day - October 11

People are more than their illness, but including your vestibular illness into your identity, can be an emotional burden for a patient.   

I express myself through art. My film titled 'Stagmus' (2017) was shown at the opening night of 'Things we hide in corners'.
Its origin is my journey to get a cure for my neurovestibular condition. When I first saw camera images of my eyes obtained through a test that assesses vestibular performance by looking for specific eye reflexes, the eye on the video looked like a caged animal. Visually the eye didn't seem part of a larger being, but rather an entity of its own, gazing at the corners of its square screen, searching for the exit. This atmosphere is what I aimed to recreate with this film that shows my right eye and its mirror image.

Coming out as a vestibular patient. Is it necessary? For whom? 

Some people recover quickly from a vestibular illness, or are only suffering from it now and again. They may not feel the need to come out. In case of invalidity they probably want to inform their employer. But that doesn't need to be detailed.

But when people have been ill for years, are and unable to participate in many aspects of daily life, they are forced to come forward with their illness sooner or later. Towards the friends whose party you are not attending - again - for example. Or perhaps also towards oneself, because it can be a substantial thing to start looking at yourself as part of the community of the chronically ill. People are more than their illness, but including your vestibular illness into your identity, can be an emotional burden for a patient.  

Misconceptions

The near and dear too, are occasionally shielded from the seriousness or nature of the disease. Some symptoms are bizarre, and can be puzzling at first for the person who experiences them. If first line medical support does not generate simple answers, and symptoms persist, your family and friends might start wondering what exactly is happening to you, while you don't yet know any specifics about your vestibular condition yourself. As a patient it is necessary from time to time to overcome any reticence towards strangers and explain your little known, badly understood affliction bravely and clearly, for example to a health insurance company. Vestibular patients are regularly confronted with negative reactions due to misconceptions or due to long road to diagnosis, in which case it is extra important to be insistent and self-assured.

Be prepared to describe the ins and outs of your condition or medication to any new health professional that you visit. Sadly that is still part of the deal when you suffer from a vestibular syndrome. 

This is exactly what House4balance is trying to change for people.

Coming out, to identify yourself as a person with a vestibular disability, is an often frustrating, continuous process, something you deal with at inconvenient moments. When for example you go for a haircut, perhaps returning after a period of illness, and you have to inform the hairdresser to handle your head very carefully, or avoid certain things altogether. It sets the tone and introduces the subject of the reality of being chronically ill, something you might have wanted to forget for a day. 

Coming out, to identify yourself as a person with a vestibular disability, is an often frustrating, continuous process, something you deal with at inconvenient moments.  

What to expect? 

The disadvantages and risks to coming out.

No vestibular patient is walking the same path when it comes to diagnostics and treatment, or shares the same environment. You're letting go of control a little bit.

By definition you are revealing yourself to others when you're coming out.
When you disclose the details of your illness to others, people are aware of the true reasons that you cannot participate in social gatherings, or are walking funny (like you're drunk) from time to time, and some will listen with interest and enquire about your well-being now and again.

You might come forward on an online platform for dizzies, who will definitely recognize many of the aspects that are unique to vestibular issues. It can provide a feeling of inclusion and being taken seriously and understood.

If you fall ill, you'll lose a lot of friends, is conventional wisdom. It's also possible however, to strengthen particular friendships, or to start new valuable relationships with people by coming forward as a vestibular patient.

But when you come out, you are also essentially making yourself vulnerable to people's often well-intended opinions and prenotions. You'll get plenty of advise you didn't ask for and have no patience for. Some people are even prejudiced, and confirmed in their beliefs if you are vague and cannot yet respond to their questions about what caused your illness, what the diagnosis is, how long recovery is expected to take, etc. duration and prognosis. Some folks have made up their mind before you address anything, and that's the way it is. Being ill is not for the faint of heart!

If you fall ill, you'll lose a lot of friends, is conventional wisdom. It's also possible however, to strengthen particular friendships, or to start new valuable relationships with people by coming forward as a vestibular patient. 

Perhaps you are applying for jobs, and are worried about coming out with a vestibular illness on your social media profile: what if a possible employer googles you?

You don't need to identify yourself to everyone as a person with a chronical illness, and to read along on an online forum you might not even need to use your full name. There are not a lot of self help groups specifically for dizzies, but you might be able to fin a qualified therapist experienced in counseling people with health issues, to receive psychological assistance discretely. You can opt to remain vague about your health condition to the world, but that can lead to more prejudice or misunderstandings. 

It can be liberating to proclaim 'I am who I am and the disease is what it is. Even if I cannot respond to every question, I am dealing with it every day. The others will just have to adapt to my reality instead of the other way around.'

Showing yourself as a person with a vestibular condition is a considerable and personal decision, that makes things feel a little more real. I had difficulty myself, opening up about the impact of the illness and its unusual symptoms and found a solution in founder Tania's book 'Dizzy me'. I ordered two and left them around the house for whoever was genuinely interested to learn more about what vestibular patients go through, and what the multiple possible syndromes exactly mean. It was a way to communicate at a time I didn't feel like coming out bells and whistles.


Nathalie, 
Working member of House4balance

The writer of this text does not want to equate in any way coming out of the closet with a sexual orientation, to a coming out as it is used in the context of this text. Both situations are different and to compare them would be injust and a simplification of reality. The writer wants to draw up some considerations in light of the specific situation of identifying oneself to the world as a person with a chronic vestibular illness. 

The extra pictures were send in by dizzies when we posted this on facebook.