To my liver doctor,
I really, really hate seeing a new consultant. I’ve had some bad experiences in the past where I’ve been belittled and blamed and made out to be making up my problems, exaggerating my symptoms or been told I ‘clearly have something wrong mentally’. Where people have refused to treat me and have literally slammed the door in my face. So I was really anxious about seeing you for all of those reasons, but also because you’re a new speciality to me and I don’t really know what livers do.
My GP referred me to you because an ultrasound told me that I had a moderate-severe case of non-alcoholic fatty liver disease, but that’s all I knew. I’d done a bit of research about it and added some liver friendly foods into my diet in case they could help reverse some of it. I’m well aware that having something like a fatty liver at my age, when I don’t drink alcohol and I have a balanced diet is *not a good thing*. So all round, I was pretty wound up about what you might say. And I was really, really worried you were going to lecture me like others had in the past, telling me I’d brought my problems on myself by being overweight and taking steroids.
I needn’t have worried. For a start, you were really friendly, despite it being what us teachers would call ‘the graveyard shift’ on a Friday afternoon. You introduced yourself (rare) and asked me to introduce my husband. I usually do introduce him to doctors, but it’s rare anyone actually asks first. I also really liked that you called yourself a ‘liver doctor’ rather than a hepatologist. Already I could tell that you wanted me to understand our consultation and you actually cared about me as a person, and not just as a walking bunch of blood results and an ultrasound scan. I got the impression you wanted to know about all of me, and not just my liver.
You asked me to clarify my diagnoses and medications lists. Not just because you needed them for accurate note keeping, but you said ‘so I can compare them with the ones I’ve got here’. You’d read my file. This hardly ever happens, but you knew about me having been to various consultants and having had emergency admissions. You noticed that I’d written my hydrocortisone dose as a different one from your record and asked about it and you didn’t give me the deer in headlights look when I talked about baselines and stress dosing for my adrenal insufficiency. You even knew what the correct baseline is for my weight.
At this point, I felt the tightly wound spring that was coiled up in my insides release. I was amazed, like cartoon mouth drop to the floor amazed. I wasn’t going to have to spend 5 minutes explaining what adrenal insufficiency is, what the treatment is and how steroids are for life and that I can’t ‘just stop taking them’. I wasn’t going to have to go over some pretty traumatic hospital admissions for the ninety-fifth time. You’d read my file. You know about my illness. In short, I knew you had this covered. I didn’t feel like I had to ‘test’ your endocrine knowledge like I usually do, trying to suss out if you do actually know or you’re just pretending you know. I was so reassured, I felt calmer, I didn’t feel like I needed to be ‘switched on’ the whole time. I could actually be like any other patient at an appointment- listen and ask questions.
You had a sense of humour. I confessed while you were examining me that I didn’t really know where my liver was until recently and how I’d done some reading about it but was still pretty clueless. You made a joke about it and then asked if I had any symptoms. I was a bit hesitant to bring up my ‘quirks’ in relation to my reading, but you gave me the confidence to tell you all of my backwards stuff and let you decide what might or might not be relevant. And then you didn’t once patronise me and tell me I was wrong or that I’d misunderstood- you recognised that I’m an expert patient and I can identify trends in my health. You took what I was saying as it was meant to be; a patient reporting what she’d noticed, even if it’s not what textbook normally happens. You looked at the graphs on my phone of data that either I’d inputted or my Apple Watch had collected. You really got my steroids. You understood what I was saying about how I get bad gastric symptoms when I taper and suggested that maybe we needed to put Inflammatory Bowel Disease back in the mix, since my steroids might mask the inflammation. You made it clear that you knew that I don’t have a choice about taking steroids and didn’t make me feel bad about being on them, which was so helpful. Usually I just get told by non-endos that the steroids are the problem and unless I stop taking them things won’t get better, with a pregnant pause while they wait to see if I respond with ‘oh well I’ll just stop taking them then’ (which will never happen). You didn’t do that.
I was also immensely grateful that you said I have a fatty liver because I’m overweight and on steroids but that none of that was my fault. It was what I was worried about and what I was expecting you to say, but you didn’t remotely imply that I’d brought it in myself. In fact, I was happy that you praised me for having managed to lose a bit of weight! You communicated to me that you knew I was trying my best and that the problems giving me fatty liver were a consequence of having adrenal insufficiency, not because of anything that I could control. You said the hard stuff that needed saying- I’m young but overweight and have various complex illnesses and that combination isn’t good. That fatty liver is usually a sign of other bits struggling. But I also felt more calm about the fact that it’s pretty depressing having a disease that most people only get when their body is on its last legs in old age. There was something about you that said ‘it’s a bit crap, but I’ve got it. I’ll worry about your liver, you worry about the other stuff’.
I actually left the appointment with no progress made. You said I needed a more detailed scan to see the extent of the damage to my liver and if it had scarred or not. My LFTs in my blood work had improved, and you congratulated me on that. But you said we needed to try to work out what’s going on and said I maybe needed retesting for IBD. You had it covered.
Normally, I leave consultant appointments needing to cheer myself up. Usually my husband and I end up in the Macdonald’s on the way home from the hospital. I didn’t feel the need to bribe myself to get through the evening with treats, I wasn’t anxious, pissed off or crying, like I usually am after appointments. Don’t get me wrong, other doctors might be good in their fields and order tests (perhaps with a bit of arguing), but I don’t usually feel cared for or like I’m moving forward. I usually feel like a lot was riding on the appointment and feel deflated that nothing had changed except the promise of more tests. That I’d just go back to my life of waiting around for the next appointment trying not to die in between, feeling terrible and having to pick my mood off the floor. Basically drag myself through the next few days after the appointment because I felt so demoralised and that things look bleak.
That’s how seeing consultants usually makes me feel. Except with my endo and now with you. We made zero progress in that consultation medically. Nothing changed and I didn’t know anything more than when I walked in. But everything changed mentally for me. You’ve got me and my liver covered and I know that, even if it is bad news. Someone else besides my endo ‘gets’ me and wants the best for me. Someone else acknowledges that I work bloody hard to be a good patient and that I’m not to blame.
So thank you for increasing my medical cheer leading squad by another member. There aren’t very many in the team, but some of the negative voices are slowly starting to be drowned out by the cheering ones.