Faking a chronic illness; or, that time I caught someone pretending to have mast cell disease

I have to tell you guys a story.  I really, really wish that I didn’t have to tell it, and honestly just typing this is making me nervous, but I do.  I am worried it will upset a lot of people, and I feel badly about that.  I have not yet told anyone about this because I wasn't completely sure what to do with it.  But here it is. 

A few months ago, I got a message from someone saying they had SM.  We continued to correspond with some regularity, with most of it being me answering questions.  She told she was getting worse and had been upgraded to SSM.  I noticed a few times that this person gave some inconsistent details.  I have a lot of tolerance for that for a few reasons.  Firstly, it’s not always easy to remember this stuff, especially if you don’t have a medical background.  Secondly, people don’t always understand their disease well enough to relay accurate details, especially in the beginning.  And lastly, sometimes it is easier to give a succinct answer for the sake of brevity.  I do this sometimes too, particularly if I am tired.  As a specific example, unless I have an hour, you’re not getting the entire story of exactly why I have a permanent colostomy.  I’ll give a brief answer on move on.  Some things take a lot of energy to explain.

So anyway.  Fast forward a few months.  This person tells me she is coming to Boston for appointments.  This is not unusual.  Brigham and Women’s is the mecca of mast cell care and a lot of people travel a long way to be seen by the experts.  If you are a mast cell patient and feel insecure about the care you are receiving, I recommend coming to the Brigham.  They know this stuff really well. 

I spend a massive amount of time at the Brigham.  I have been seeing doctors there for literally my entire life.  (I was born there.)  I know all the nooks and crannies, the secret rooftop porch on the maternity floor, and that they used to have a smoking section out back under a crappy tent.  On a bad week, I’m inpatient for several days.  On a typical week, I’m spending at least three hours there.  (This is much less now that I have a central line so I can infuse/IV push at home – it used to be more like twenty hours a week.)    I am managed primarily by three doctors (two immunologists, one GI/mast cell specialist), but also have other specialists I see on occasion, including a hematologist at the Dana Farber. 

So I ask this woman how her appointments went.  She told me all about them, including which day she saw one of the doctors.  This doctor is my doctor.  He only sees patients a few days a week and has a very specific schedule.  I know this, for sure, because a couple of weeks ago, I had to cancel my appointment with him on a Friday because I was too sick to go in.  (I had a nasty cold and with being immunosuppressed, I was not feeling up to the challenge.)  In rescheduling the appointment, his admin told me his availability and the days he would be away to work around.  But he has had the same schedule for years. 

So this woman tells me she was seen by my doctor on a day he was definitely not in the office.  Yes, I suppose it was possible his admin (that I interact with a lot) lied to me, but I don’t think that’s the case.  As soon as this woman told me she saw him on that day, my spidey sense went up.  I asked some other questions about her appointments.  She told me she saw another one of my doctors on the same day.   I asked her how long it took her to get an appointment and she told me a couple of weeks.  It takes a lot longer than that to get into this doctor, and you need to have a boatload of documentation to get an appointment.  Biopsy results, the whole shebang.  I know because even though I was a patient at the Brigham, I had to jump through a lot of hoops to get in to this doctor.  I knew right then that she was lying.

I wasn’t sure right away if she was lying about coming to Boston or about having mast cell disease.   Sometimes people lie about weird things, but that doesn't negate their larger reality.  So I asked her questions about procedures, biopsies, stuff like that.  Stuff that you remember well.  She had told me before that she had gotten IVIG (not common in treatment for mast cell disease) and I asked her about that.  She had told me that she was getting a port.  A lot of the details were wrong, not in a way that indicated forgetfulness, but in a way that indicated she was a liar. 

When I looked back through our conversation, I found evidence of a few things: repeated inconsistencies, and a few things that mirrored my own medical history, things I had told her.  I have other diseases in addition to mast cell disease so some of my symptoms are from those, and are not typically seen in mast cell disease.  I’m not saying it’s impossible that she had it, but by then I knew she was lying so everything was suspect.  I waited and thought about it a lot because everyone with a rare disease has been a called a liar and I needed to be sure.  But  eventually I was sure, and I told her I was sure. 

She got really mad, predictably, and I let her go off for a while.  This happened over a few days.  Then she told me she was sorry that she did this to me.  Not a slam dunk admission of guilt, I know, but if she really had masto, this would have played out a lot differently.   Later on, she asked how I knew.  That was when I was 100% sure.  And that was when I decided I needed to tell everyone what happened.

This person is not on any of the forums I belong to (she was a member of one a few months ago, but left.)  She is not, to my knowledge, a member of the larger online mast cell community.  I told her if she stopped doing this, and didn’t join any forums, I wouldn’t out her publicly.  But I told her I would tell people what happened so that they would be aware.  And I also told her that if she did it again, I would tell everyone who she was.

What’s weird about this whole thing is that I have always been fascinated by people who do this sort of thing.  Especially people who have blogs or join communities and pretend to have cancer, that sort of thing.  I love the show Catfish, and they actually just had an episode about a girl who pretended to have cancer.  Some people know these things about me, so I just wanted to be transparent about it.  It is a coincidence.  Those happen sometimes.  I am about to walk to my mother's house to tell my sister that this happened and she is going to freak out because we watch Catfish together every week.  I still can't believe this happened.

Despite my previous fascinations, I didn’t find any of this experience interesting.  I found it enraging and very sad.  All of us have been accused of faking.  Some of us continue to be, even years after diagnosis.  I can’t summon even an ounce of sympathy for someone who pretends to have a disease that is disabling me and destroys the lives of people in my community.

I also want to say that this person is the only person I have ever suspected of faking mast cell disease.  I do not doubt the truth of anyone on any of the forums or anyone I am in contact with in any other way.   I know all of you are real people with real health issues.  But this happened.  It took me months to catch it, and I consider myself a pretty vigilant person.  No online interaction is immune to this sort of thing, obviously.

This whole thing has made me think a lot about how dangerous things like this are to the chronically ill community.  I have been accused of faking a lot, and I remember every instance.  I remember girls laughing at me in high school and accusing me of not needing my crutches when I had two broken vertebrae because I would sometimes walk without them.  I remember people accusing me of trying to con the administration at my university because I didn’t always have a limp.  And in recent years, the hypervariable nature of mast cell symptoms meant that a lot of people in my professional life have thought I just felt like taking time off.  It is maddening and damaging.  When people actually fake illness, they become reference points that people who doubt us use for proof. 

I want to be clear about a few other things.  I have systemic mast cell disease.  I have a PICC line and a colostomy as a result of mast cell disease.  These are ironclad, verifiable facts and have been witnessed by many people in real life.  But yes, there are details of my life, and of my disease, that I leave off the larger internet.  That is my personal choice.  If you are friends with me on FB, then you probably notice I post pictures A LOT of procedures/medical stuff/etc.  I do this so that there’s never any doubt that this is real.  And I have to say, right now, I am really, really glad that I did. 

So, yea.  This happened.  Here's hoping this week is less eventful.