Freedom to us all.

The story of Bodine

Statistics show there are around 30 million Europeans living with a rare disease. Most of them caused by genetic deficiency, some also caused by environmental factors. 

Now, let that properly sink in for a second. That is Europe only. 

Worldwide there are so many of these people, chances are you know someone living with a rare disease, or someone affected by it. Diseases so rare that all research done about it, is merely used as a vague guideline throughout the treatment of it. 

Symptoms seen so few before, patients might need to teach their medical supervisors a thing or two about their experiences. Illnesses so rarely acquainted with, people living with them are slowly losing hope. 

Hope for research money, hope for quality of life and most of all hope for a cure. There are countless of these people and ironically each and every one of them have one thing in common: their situation is incredibly rare.

I happen to be one of those people.  

I have a condition called Behcet’s disease. Some might know it as Behcet’s syndrome or Silk Road disease but for most people it’s a “never heard of that“-thing. In the Netherlands, where I live, chances are one in a hundred thousand you have it. The prevalence varies in some parts of the world but pretty much everywhere it’s considered rare. 

Simply put, it’s  a cardio vascular condition. Some might experience it as a bunch of auto immune conditions all in one, but every case presents itself in a different way. For me it has been severely debilitating up until now.

The condition is chronic and  in a number of cases possibly fatal.

Despite the fact there’s so many of us, having a rare illness is often experienced as lonely.  As my situation seemed so unique, it took several doctors throughout the country, many years to diagnose me. Although the disease was already mentioned in my early stages of sickness, by limited information available, it was ruled out as an actual option, too little too soon.

That was until the sight of it was so offputting, doctors had no choice to research until they found an answer. The answer presented itself in form of positive specific test results. Initially, I felt incredible relief.

I thought my diagnosis would be the end of a long, exhausting journey.  But as so many of us, rare disease sufferers, will immediately recognize; the diagnosis is but the beginning of it all. You see, when a disease is rare, treatment is not a sure thing. 

When you’re suffering from a condition like this, you’ll find most carers are eager to help.That’s assuming they might have access to the solution. 

Once it becomes clear that even with all good intentions, the solution is just not there, things could be getting uncomfortable. Helpers will back out, even if that is unwillingly. The idea of ‘messing’ with an illness so rare is scary and many caregivers will look at it as a mountain that can’t be moved. Their focus is being moved to fighting existing symptoms, rather than focusing on what’s causing the symptoms in the first place.

So, where does that leave us as patients? 

Most of us learn to suffer in silence, waiting for help or just little relief.

We get quiet and sometimes even overlooked.

There’s a certain chain of command in ‘Disease World’ and if you’re the lucky receiver of a rare condition, your group is most likely last in line. 

Could it be because healing your disease is less important than any other? 

Is it because people just don’t care? 

I think not. I sure hope not.

I’m afraid they just don’t know about you. And you can’t care for anything you don’t know about in the first place.

The reasons behind that aren’t exactly rocket science.

If there’s not a large number of sufferers, there is not much awareness.

And if there is little awareness, there’s probably a lack of money for thorough research.

Logically, where there’s a lack of thorough research, there is limited information.

And finally when there is limited information, patients and doctors are confined to a life long guessing game, sadly surprised by each occuring new symptom.

Patients become insecure, suspicious of the body they’re living in and wait for the next symptom to present itself.  Prisoners from our conditions, held hostage by our own bodies.And if this weren’t enough already, all of this evokes a continuous cycle of stress, which is considered one of major contributing factors in chronic rare diseases.

Here we are. We feel alone, we feel stressed, we feel ill and we’re afraid.

When you’re seemingly left alone, you’re left with a lot of time on your hands. Time to think things over. 

And if you ask me, when you really come to think about it, there is so much beauty in the word rare. 

There is uniqueness that partially describes you, the owner of your own rare condition. 

Rare makes you stand out. 

Rare has the power to isolate you but  also has the ability to inspire and connect.

Personally, I’ve lately found I’ve lost my, once loud, voice. 

I’ve felt that I was left alone with this punishment of a disease and let it take  my will to be heard. 

Sparing my energy for worse days ahead, while fighting all this by myself. 

I stayed put in a quiet corner, waiting for a miracle, wishing for a cure. Caged in between the four walls that became my daily reality, hoping someone would care enough to make it happen.

 

Finding a solution to a problem always starts with acknowledgement.

We expect the world to acknowledge our suffering, yet we continue to suffer in silence.

We wish for a reaching hand when sometimes we hesitate to reach out ourselves. We keep fighting like lonesome warriors when we could also have been storytellers together.

Here’s the thing, if we keep hiding, we’re nowhere to be found.

Making people aware of the importance of curing,  or even preventing your illness, starts with you and you only. I’m talking to the people living it every day. Only those going through it can make their stories heard. Only you can inspire to take action, by making sure your story is out there. 

Just by telling us who you are. 

By believing your research cause, your cure, is as worthy as any other. Even on the days you feel weak and as if there’s no point in fighting it all. 

Heck, especially then.

Just you, you’re inspiring. 

It’s that simple.

What if we, decide not to be caged in between these four walls but to seek freedom in the space that was handed to us? Showing ourselves despite the vulnerability that was forced upon us by this disease, and rise above it.

We are here. We are not only rare but we’re unique. We need help but we’re strong. Strong enough to guide us through this unknown territory together.

If we show our faces and invite the world into our reality, we free ourselves from waiting for the miracle to happen. We’re fueling our strength to fight. We’re raising awareness ourselves, we’re making it happen ourselves.

But by speaking up we’re not only raising awareness. We distance ourselves from isolation, possible emberassment and take ownership of our conditions. We actively take part in the solution and are therefore a crucial part in fighting the disease.

We take part in something bigger than ourselves. We’ll find ourself participating again. We free ourselves.

 

In honor of 2018’s Rare Disease Day,

I choose to be a part of the solution. 

I’ll speak up for myself and my own cause. I’ll wish freedom for me.

However there is this thing much more powerful than seeing only my face or reading just my story.

There’s power in uniting. The importance in our cause is in all of our stories combined.

Therefore, I ask all of you to make yourself heard and seen from the cage you’ve felt confined to and plan your own great escape.

Maybe if we all do, we’ll find together we’re not that rare at all. 

And with all of our forces combined, we’ll start breaking the shackles our rare forced upon us.

 

Freedom to us all.

 

 

#patientinvolvement

#rarediseaseday

#showyourrare

#freedomtousall

 

*Find others with Behçet disease on RareConnect, the online platform for people affected by a rare disease.