Sunday 23 August 2020

Rare disease: 180 days of being in (Corona) isolation




















Yep you read that right it has been 180 days, that is indeed half a year. And even though I am no stranger to being isolated it is kind of driving me up the wall right now. So why not go outside you say, go for a walk, get some groceries, enjoy some company etcetera. Well for someone that is chronically ill with a rare disease it is just not that simple. I cannot take the risk of getting infected with the Coronavirus and because I am at high risk it is just better to eliminate as much risk as I can.


Anyways I have been seeing more and more articles, stories etc. about why should we be careful around the vulnerable, the chronically ill and the elderly?! To put it in a very blunt way; Why should we save them because they were going to die soon anyway. Well, I wasn’t planning on dying anytime soon, I want to make something of my life. I am 32 years old and have been chronically ill for over the past 12 years and have been living in isolation for long periods at a time during these twelve years, meaning not going outside at all, not seeing anyone else besides my family or maybe only at those time go outside for the necessary doctor's appointment. About 2 years ago I finally got to test a new medicine and they make my life more bearable more of a life again. It’s not that I am not ill anymore it hasn’t taken away my rare the disease but in a nutshell, the flare-ups are less frequent which gives me more time. Now Corona has come along and I am (back) in complete isolation since the end of February. I haven’t left my house at all. At first, there was so much understanding and so much appreciation for all medical staff for people who already live in isolation etc. I saw so many started initiatives to bring people “together” to help out those in need. I do understand that the rules can and are confusing and ever contradicting at some times. I get that everyone wants to get back to normal because it would also be devastating for the economy if it didn’t. And if they are so worried about the economy regarding these rules and not following them anyway what do they think will happen to the economy if another lockdown will happen god forbid even a longer one or worse one. Isn't it far easier to adjust to the guidelines for a while and I am talking about those who really ignore all rules and even endanger others by doing so. Even if that someone doesn't get sick they could infect someone else. Someone vulnerable, someone who works in healthcare, someone with a vital profession. Don't they understand that even though, over here in the Netherlands, that the death toll and the infections aren't as high as they where that it doesn't mean we are out of the woods? We do know now how to treat people better and there are more bed in the hospital open to take care of those who are sick but there still isn't a vaccine or medication for this so unless we are all careful and take our responsibility we can keep on going to "control" the virus. Or are all the people who feel that way, who think they won't get sick, who don't care about the butterfly effect they could set in motion are they such tough guys they just don’t care a "little" (chronically) ill person less right?!


I don't understand why not just hold to at least those few rules and guidelines that are there, like keeping distance, no shaking hands and hugging (those outside your bubble), wearing a mask in places where it is asked of you, washing your hands frequently, avoid crowded places and not thinking well they are going... Things like that. 


What concerns me more is that I hear/read/see more and that those who are vulnerable should keep their distance, but how would this work in a supermarket for instance. Would someone write it on their face, wear a tag, announce themselves every few minutes just to be sure others keep away, please enlighten me. And in a country like the Netherlands where I am from, we have about 17 million people. Statistics say that on January first 2018 we had about 9,9 million people known who have any type of form of chronic disease. Meaning highly likely no form of recovery is in sight. That was about 58% of the population at the time. Just for those who still think it is just about a few people who we need to be careful around. 


I am someone’s daughter.

I am someone’s sister.

I am a person of flesh and blood.

I am a person with feelings.

I am not my rare disease.

I am someone!


So why are so many saying let the vulnerable keep distance, you wouldn’t be able to tell if you saw me that I am very ill and am at high risk. Why is it so difficult to hold to those few rules for just a little while longer, why is it that my life has no value compared to someone who isn’t ill, why can’t we do this together, all these people didn’t have to die yet, it is not only nature, besides isn’t it only humane to take care of one another. So today it has been exactly 180 days of being in isolation and I am starting to see my future getting grimmer by the minute. I had hoped people would become more understanding but alas I hear more and more that people like me shouldn’t be here anyway and I am only a waste of space. Great! I can only hope that 180 is a symbolic number to change and a change of mindset and caring for one another.


And I have said this before but I will post this here again:


Just please follow the guidelines of your government and health department, like:

  • wash your hands regularly 
  • don't shake hands, avoid close contact with others
  • avoid touching your eyes, nose or mouth with (unwashed) hands
  • cough and sneeze in your elbow
  • avoid going to crowded places
  • stay at home if you are sick
  • avoid contact with people who are sick
  • work from home if you can
  • don’t visit those who are at high risk like your elderly or (chronically) ill relatives/friends
  • check-in on one another (family, friends, neighbours) call or text them
  • help if you can

Regarding that last note even if it is just calling your grandparents, parents, siblings, friends or other relatives who might feel or be alone or feel or be frightened. Maybe hang a note in you apartment complex asking if someone needs help or share some more positivity on social media.

So please don’t be that person who says I’m not scared of shaking someone’s hand or hugging someone, well I don’t want you to be scared at all! I want you to be sensible and responsible for yourself, your loved ones and others. I get we all process this in different ways and I don't want to be pointing fingers or telling people what to do and don't do. But I do want to say that don't yell at someone who hoards you don't know their reason, don't diminish someone who panics they could have already sick relatives/friends, please take your responsibilities, please use your common sense, please don’t panic, please don’t downgrade the seriousness, please if you can do help out someone, please don't judge others, please stay safe.


I hope everyone stays as safe and healthy as they can be and try to do everything in their power to prevent it from spreading further. 


x Poppy

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