I had my appointment with the hematologist last week. I want to take you through a brief synopsis of said appointment, you know, in case you’ve only ever been to the doctor for things they see everyday… Things that are acknowledged… Things that are recognized as real and therefore you were treated as valid…

I want to preface this by saying that this doctor did seem to be a perfectly lovely human being. She was kind and knowledgeable and did seem to genuinely want to help. This is in stark contrast to many, many (not all but MANY) doctors that I have seen who instead appear to not have much knowledge at all, while simultaneously acting like they know everything and completely discounting anything I may say as having any value, if they even acknowledge the fact that I’m speaking at all. That said, let’s get to the appointment shall we.

A little back story, I am an anxious person. I don’t want to get into all of that now but I am. Anxious. Appointments of any type tend to have me extremely overwhelmed to the point of nearing panic. This has improved over the years and I can mostly hide it and get through appointments seeming like a fairly normal human being instead of the ball of anxiety wrapped in skin that I feel myself to be. This appointment was different.

I spent all morning in a state of panic. I was really nervous about having to ask about the possibility of MCAS. I had asked my naturopath if she would write something for me to bring. She didn’t think it was necessary as she thought the doctor would have heard of it. I wasn’t worried about her not having heard of it but more of me not being heard when I brought it up(because this has commonly been my experience) but she’s a busy woman so I didn’t push it.

On top of the normal appointment anxiety and the MCAS question induced panic, the day was just one of those where everything seems to go wrong and I ended up being 10 minutes late. I am NEVER late. I prefer to arrive at least ten minutes early because… You guessed it, the possibility of being late causes me copious amounts of anxiety.

Needless to say, I was a ball of raw nerves when the doctor walked in (thank God my sister went with me, in case I lost my words because I did just that). Apparently, so much so that it was readily visible because it was the first thing said doctor commented on when she walked in the door (she wrongly assumed that I was anxious about my diagnosis, again wrongly assuming I thought it might be cancer).

She went through all of my blood work to explain to me that I do not have cancer and I am fine. I’m fact, had I (and my sister. Thank you, I love you) not brought up MCAS, that would have been the whole of the appointment. You don’t have cancer therefore, you are fine (giving credence to my belief that people only take you seriously if you have cancer, no matter how sick you are with something else). But I’m not fine. I have been very sick for eleven years. If she wasn’t aware of that (because, you know, why would my PCP want to mention that in my referral), she most definitely was aware that my white blood cell counts have been high, chronically, for years. That’s why I’m here.

Her explanation was that my body was just reacting to things. Well yeah, no shit. Why?

I said that I wasn’t worried about cancer but that I think that I have Mast Cell Activation Syndrome and my sister filled in the back story because… again…anxiety…no words. She, the doctor not my sister, said that yes, that could account for my wonky white blood cells and ordered more tests(I’m still unclear on the results) and sent a referral for an immunologist.

This appointment actually went really well, like this is the best outcome I could have hoped for but… If I hadn’t pushed, it would have been, you don’t have cancer, you’re fine. No acknowledgement of anything else.

When we were getting ready to go, the doctor said something along the lines of, sometimes it just takes awhile to get a diagnosis, especially with these rare diseases. I think she was trying to be comforting and I really do appreciate that but …. It was said so nonchalantly and off the cuff, like over a decade of having a debilitating illness is no big deal. Eh, it’s just the way it is. But it isn’t nothing. Have you, dear doctor, ever been sick for even a year straight? I doubt it, otherwise you wouldn’t be so nonchalant. I understand that doctors are only human and that they only have the information that they have but maybe, just maybe, if more doctors listened to their patients and took them seriously, it wouldn’t take more than a decade for people who are very ill, to find a diagnosis and hopefully treatment that actually helps.