A few days ago I had the great pleasure of announcing on social media that I no longer had POTS. It felt miraculous to me but when my doctor said, “Well, I think it is fair to say you do not have POTS anymore” I was over the moon. POTS has been one of my most annoying diagnoses—to have autonomic dysfunction means a lot more than being dizzy, low-energy, tachycardic, etc. I often could not feel hot or cold, my face and limbs would tingle or grow number or burn. The main reason I used a cane over the years was because of vestibular problems caused by POTS.

But in recent months I began using my cane less and less. I even started going on subways without a cane. People not offering me their seats began looking like a sign of wellness. Even with a mask on, I was perceived as normal. Often, I could stand a whole 20 minutes or more on the subway, without leaning on a thing.

The only POTS medication I was taking was propranolol as I’d routinely have a pulse rate of 100+. I would wake up with a pulse of 120 routinely. Then I’d take my betablocker and it would do down to 80. But recently I had started to wake up with a pulse of 70. It started to look silly to take a betablocker.

I started testing my blood pressure on sitting versus standing and versus lying down. Again, it looked the way I had only read about normal people’s looking like.

What helped? Balancing minerals and electrolytes? Proper methylation support? Detoxing mold with the big guns: cholestyramine, itraconazole, and phosphatidylcholine IVs? Adding LDN to the mix? Bringing down inflammation with medical marijuana? Who could say for sure but months of extremely hard work to make myself functional again had somehow paid off.

And so I shouted it off the rooftops and so many all over the world sent me well wishes. But of course the sad human brain being what it is, I immediately noticed silence among some of my old chronic illness friends. Not a word as the day went by. It took a few days to notice three of them had unfollowed me.

I should be used to this by now. The adding and subtracting of love when you are ill is a very interesting algorithm in itself. Get sick and lose friends but then gain some sick friends, get well and lose the sick friends and then gain some of your old friends plus some new friends. But you always notice the absences. Nothing has been harder in all this—perhaps other than merely staying alive and making it all financially work—than its effect on friendship.

In chronic illness circles, some will come to you who are ill like you. These people can be of several types: just another sick person who is much like you, a person who has built their entire platform off of being sick and so they need to monitor you too as if you are a brand, and the person struggling to leave the illness circle and your mere existence is a reminder of their suffering. The last two will not last. The second one is someone who appears entirely competent, often has a large social media following, has the science jargon down, who will help you as much as you want while you are ill and outside of that you do not exist—this is not your problem of course, but it’s because this person does not exist outside their diagnoses. This is all they have become to themselves and the only way they can function in this mess is by imagining they are changing history. But what if they are not? And what if they are wrong? This person is not a doctor and will be very threatened by the information you supply if it goes against her ideas. Because, again, this is all this person is now—this is what she has made of herself and your existence can threaten her very easily if it somehow presents another truth. The last type is someone who thinks everything is about them and so your progress whether up or down is something they will measure against their own. They are ill but badly want not to be—like most of us!—but they see your reflection and they run to literally anything. They have created wild versions of you in their head, they believe all sorts of untruths about who you are and what you do, while meanwhile they have nothing to show for their own new projected life. Both of these types start to hate you and often they know this is irrational so they have to distance. This is where the unfollowing should seem a blessing to you, though of course it does not.

A long time ago, I would check in. Did I do something wrong? Can I fix this? What happened? I would do this a lot and I would feel hurt when I would not get the answers I was seeking or if I got no answers at all. But this past year, I stopped doing it. I realized I don’t want people who don’t want me in their lives. It was horrible to lose people but it was probably more horrible to imagine people who wished me unwell in my life. Especially if those people pretended to be the most caring.

Reader, would it surprise you if I told you some of your faves, beloved personalities of my world and yours, were the most cruel to me in this recent few years of unrelenting illness? The ones who when I was most down looked away, the ones who left me only to befriend my friends and exes, the ones who continued to pretend we were friends for their own gain while leaving me a mess of unanswered emails and texts?

My therapist used the word “abuse” when speaking of them and I fought it until I realized it was exactly that. Abuse. These people had maybe been abused themselves—they had lost many in their lives as well, I knew—but the only way they knew how to cope with me was through the most unbearable. In creating pain for me maybe they were creating a problem in our lives that had a solution. But I did not imagine the solution was letting go of them.

If you choose to live your life publicly to some degree—and so many of us almost unwittingly do these days—you will experience very awkward shifts in relationship with many people you have never met. Which makes the thing so much more awkward. And then you will also experience those with people you knew in real life.

As much as people want to paint the ill as saints and see the chronically ill way beyond the light of human being, chronic illness circles can be just as nasty as others. It did not surprise me to find out many of the reddit groups targeting chronically ill women were, well, other chronically ill women. I will never forget a dear friends reading over my bloodwork and getting exasperated because she felt what was off was insignificant and just like her numbers. When I asked a doctor about it the next week, he said she would have had to be bedridden like I was with numbers like this. When this person began lying to me and I found out had lied to so many others to the point where I questioned our entire friendship—something she had initiated—she let me go. And it hurt. Out of the blue, her husband wrote me and said she could not be there for me for the moment. She had in the end not even had the courage to write me herself. And soon not only was I unfriended for reasons I will never know, I was even blocked on social media. Again, I tried to reason with myself—this person has always admitted to being extremely jealous and always hated to see the successes of other friends she abandoned, this person gave her online life much weight as she was otherwise often quite isolated from the real world, this person was not who I ever thought she was so how could I even pretend to understand any of this—but in the end it came back to the idea that releasing someone who thinks badly of you while pretending otherwise is something incredibly healthy to do.

I am not talking about “toxic people.” I am talking about people who know best how to be a foul-weathered friend.

When a famous neurosurgeon believed I had CCI, immediately two people I only knew from the internet—who had large followings and were indeed the kind of professional patient I spoke of before—reached out to me in a way I assumed meant friendship. I didn’t even realize for a long time that they only dialogued with me on the plane of our shared suffering. Outside of that, I did not exist. And then recently when I realized my CCI symptoms were abating just as my POTS was—and perhaps pointing to neuroinflammation being the culprit—these people no longer had use for me. I was somehow a traitor to their cause. And their cause seemed to be of late in gathering as many people as they could under this very suspect diagnosis. They were doing all sorts of social media polls and presenting that as data, constantly adding to and editing websites with information on this as if their theories were now established scientific fact. If you did not fit into their reality or if you questioned it, you were the enemy. And so before I could become the enemy fully, I stepped away.

This time I did the unfollowing and the muting. And it felt awful. Because social media has created a way for us, perhaps best in the form of a block, of evaporating people. You are basically attempting to obliterate their existence from your reality. I see so many people remark on twitter that they wish you could block people in real life. But nothing is more terrifying to me. In a sense all homicide and suicide is a way of trying to permanently alter reality be removing a living being from existence. The violence here is unmistakable and it seems one has to admit every time they do it, they are the problem just as much if not more as the other person.

But also you come back to this: life is short. We are constantly asked to interact as if it was a job. And we have our small corners with our loved ones, families and friends and pets etc. How do we carve space for all of them? And for our best self to function with all that?

When your body is failing publicly you are a theater of everyone’s inevitability. The horror is communal. You are the campfire story of everyone’s ending. Here is a body functioning like yours; now here is a body failing like yours one day will. What will you do? Look? Look away? Who is your best self when all around you are reminders in flesh and blood that all this abundance is headed toward nothing?

Every Thanksgiving I share this James Wright poem with the internet, because most my loved ones are not the poetry-reading kind. So I will leave this here. It’s no answer, but like the best art raises the right questions. May we be so happy: