5 things I’ve learned from #NEISVoid (No End in Sight)

How the #NEISVoid changed my life

I joined Twitter in January 2010 and this was my first tweet: “Another social networking site. Where does this end?” I did not tweet for 9 years, until 2019, when I tweeted for a grand total of 3 times.

In 2020, I started writing this blog and my friends kept saying that I should put my posts out on twitter, as they could help more people. Even then, until October, I had no clue how to really use it properly (I don’t think I still do, to be honest).

However, somewhere in November 2020, twitter changed my life. When I was searching for #chronicpain, something called #NEISVoid popped up. I didn’t understand what it meant so I googled about it (that is how hopeless I was/am on twitter) and it blew my mind. It is a “No End In Sight Void”, for people with chronic, invisible, illnesses with no end in sight for their struggles – a safe space where questions can be asked, answers can be received and free yelling can be done to take out frustration. Here is the best part: all without judgment!

Brianne Benness, keeper of the #NEISVoid, is simply amazing. With all her conditions, I have no idea how she retweets most, if not all, tweets with this hashtag. I wouldn’t have seen some of the tweets if it were not for that. Her podcast, No End in Sight, is rated among the best podcasts on chronic illnesses. She is back from her hiatus and I’m so grateful for that!

Here are things that I’ve learned from the NEISVoid.

1. No matter how rare your condition is, you are not alone.

For years, all that I was hearing from my doctors is that they have never seen a “case” like me. That word annoyed me, to begin with. As a lawyer, a “case” is a problem that I’d take to a court of law for judgment when I couldn’t help a client solve it any other way. So calling people with conditions that are not clearly defined in a textbook or a doctor has not seen enough of as cases is just plain offensive.

I digress. The point is – I felt alone. Completely alone. This affected how I viewed the relationships around me. However, when I asked a question about one of my most bizarre symptoms, with #NEISVoid, at least seven people wrote back saying they have it and how they have handled it. It just blew my mind! Just the validation that this is not an imaginary thing but something that has been experienced by real people somewhere in this world. I did not feel alone anymore

2. There is a lot of Medical Bullshit going around in the world.

Thankfully, I have mostly had decent doctors. Or so I thought, until I started reading the Med B/s threads. A lot of what my doctors told me, and which I accepted on face value, was bullshit. Even when I had a nagging sensation in my mind, a gut feeling that it was not right, I followed them because that is how much the system has gaslighted people with chronic illnesses.

For example, I was repeatedly made to do CBT for my insomnia (at least 4 times until now) but except for the first time, which was before my fibromyalgia was triggered, it never really worked. In fact, the last time (about 6 months ago), it very nearly broke me. That is when I started questioning whether generic treatments like this will work for people with chronic conditions (especially with various co-morbidities) without individual attention.

When I read the Med B/S stories in the #NEISVoid, I realized that my gut feeling was not wrong. So I spoke with my (new) doctor (who is amazing), who agreed that sleep was something that we should focus on and came up with some non-addictive medications or supplements that I can try to make sure I get a restful sleep. She also figured out that the in-between waking up that kept happening to me was possibly because of an over-worked liver (due to my gallstones)

3. There are practical ways to handle a medical problem – up to a point.

A lot of times, doctors cannot do much beyond prescribing medication, supplements or treatments, but we need practical ways to handle the consequences of a medical problem. How do I shower when I am tired, but really have to? How do I exercise when I sense a flare up is on its way? There are so many blogs on various topics related to chronic illnesses (and I follow plenty of them), but when you need an answer without straining your fingers, eyes and every ounce of your remaining spoons – there is always someone in the #NEISVoid with answers.  

4. You can make informed decisions.

Many times, we walk out of a doctor’s office with a prescription, pick it up at a pharmacy and just start using it. Some of us with years of suffering do some research to see if it will be okay for us or not. I started doing this last year after I had horrible reactions to so many medications. Still, even with all the googling, you cannot understand what the experiences of so many others with conditions like yours have been. #NEISVoid is that place.

Don’t get me wrong. I’m not saying you should make your decision based on what someone says in twitter. Of course not. What I’m saying is it is useful to listen to others, process the information along with your own similar experiences, speak with your doctor about it and make a decision

5. You are your best advocate.

I’ve been a lawyer for a decade and a half. I’ve always advocated for other’s causes. While I’ve been able to speak up for myself as assertively as I could with my doctors, I am more confident now. I write down my symptoms clearly and what I expect from my doctor. I am able to accept things that I cannot change (grudgingly, okay) and fight for the things that can be changed. For this, I will always be grateful to the #NEISVoid.