Consulting rooms in X Hospital in 2003
Doctor 1: Mrs Saxton, could you please step out of the room?
Consulting rooms in Y Hospital in 2006
Doctor 2: Mrs Saxton, could you please step out of the room?
Consulting rooms in N Hospital in 2011
Doctor 3: Mrs Saxton, could you please –
Me: No she could not! I am not being forced to attend this appointment, I came of my own free will, I can leave of my own free will, and in case you’re wondering I am not a member of a bizarre religious cult. I know this may be hard for you to understand but I have perfectly good relationship with my both parents; even my Mum! And not that it’s any of your business - but at this moment I’m not married or in a serious relationship. My friends have jobs and I don’t want to ask them to take time off from their jobs to come to this consultation which, if you do your job properly, will contain a lot of seriously important and useful information that I may not fully digest or hear correctly. We have a lot of ground to cover today and I think 3 brains, are better than 1. Being a neurologist you should agree! So, no, my mother will not be stepping out of the room.
I might not have said exactly all of this - but Mum really has been asked to leave consultations several times since my migraine journey began when I was a bright eyed, smiley 18 year old. I’m not quite sure why, she’s a sweetie! Some Doctors genuinely could not understand why an 18 year old would want a parent present, and it dawned on me that these Doctors thought migraines were purely ‘psychological’ – induced, perhaps, by having this awful, horrendous mother who took time out of her life to, oh my god, support her daughter. Usually, when I assured them that I was not being beaten at home, Mum was allowed to re-enter the room. We migraineurs can find it hard enough to be taken seriously, so as a younger woman, just out of her teens, I thought it would be helpful to have a parent there.
I tried going to see Consultants with Dad, he’s an imposing figure. He cuts a handsome figure in his tailor made suits, and is very good at the ‘do you know so and so’ game, as his elder brother was a prestigious Doctor. He’s also had surgery on nearly every bit of his body, so always has some Kevin Bacon 6th degree of contact with most medical person. His years as a Head Hunter always come in use, when debating treatment options he often asks, “Which one would you give your Daughter?” But even as recently as August 2011, Dad and I went to see a new spinal surgeon together and met a stony wall of… ice. Neither of us could crack this guy. By now, after 13 years, I’ve become much more confident and pretty good at ‘pitching’ to new Consultants. But it’s an exhausting process, you’ve got to condense your long complex history, past tried and tested treatments etc, into under an hour. Yes, I have a 2 page medical record CV and, even though I say so myself, I think I’m damn good at telling my story in a useful way. I now know the key questions most Doctors will ask as I’ve seen so many specialists over the years, so fit that in to my spiel. But this guy… he didn’t even want my full pitch. The cheek.
I returned for the follow-up and test results with Mum, could she crack this man? At least get him to look me in the eye? At this time I was in a bad way, half my face was numb, I couldn’t feel my left hand, plus the migraines were chronic, 3-day wipe-out affairs. I asked him several questions, including why, in his opinion, I was in so much pain. I was referring to the neck/spine issues for which I’d been referred to him. He replied, “I don’t know. You might not even have migraines. Don’t jump the gun.”
I am never lost for words. But I was lost for words and actually had to hold my breath to stop from screaming or crying. Putting aside the fact that this guy wasn’t even a neurologist - he had just trashed my life, essentially. I had just quit my job because my health had deteriorated to such an extent and this man was offering me no help. Mum calmly stood up, thanked him for his time and led me out. I had placed so much hope in this new Consultant; I was destroyed. As we headed downstairs in the lift Mum could see I was on the verge.
She took my hand and said, “Don’t you cry. Don’t you let him win. We still got some valuable information and test results from this and we will simply find another Doctor who can help us.”
“But I can’t feel my face!” And of course I then burst into tears and Mum hugged me. We got a cold letter saying basically, in his opinion, there was nothing much wrong with me, I was fit to work, could even run a marathon. The letter began with “She attended with her Mother.” We found another Doctor.
“Ah, you brought your Father, brilliant! I never think patients should come to new appointments alone, so much information to digest.” I could have kissed this new Doctor! He was rather handsome. And for your mild information further test results showed there were, in fact, a few things wrong with me. For your even milder information, I asked for the Radiologist’s report, direct from the lab, for the various tests done by mean Doctor, and they were incredibly useful and enlightening.
I could give you countless examples of how having my parents at various consultations over the years has been life saving. My Mum notices aspects of my migraines I don’t. For example, I never knew that my left eye starts to droop and shut. She's also a migraineur too, so her input is useful. Dad’s near perfect recall has been invaluable for discussing medication, dosages and treatment plans. They have had the courage to stand up to top Consultants who have belittled me (I still remember with glee the day Dad “dismissed” a famous Consultant who refused to listen), and they've given me the courage not to give up the search of finding that precious thing – a Doctor who is on your team and will work with you to get better. I would have given up years ago if it wasn’t for them – when the first Doctor I ever saw said “Well, I’m not sure there’s much more I can do”. You do not want to know what Mum said to him. Do not mess with Mothers.
It may seem strange to anyone reading this to know that a woman in her 30’s take a parent with her to the Doctors. But when I’m grey and wrinkly I’ll be taking my super rich, 6ft 3 eco-architect husband, and going with him, to important medical appointments. I once made fun of a friend at University (just before my saga began) who was off to see his neurologist for his epilepsy. He was leaving a lecture early to meet his parents who were attending with him.
“Your parents are going with you?” I scornfully asked. He looked at me as if I was insane. “Of course they are! It’s my health, my life. I have big decisions to make.” And he said they wanted and should be involved. I now completely understand what he meant. If I decide to try a new preventative, for example, that can have huge repercussions, and it’s amazing to have someone to debate the pros and cons of this with. Busy Consultants are often in a rush and may want to push decisions or medications on you – having a second person in the room to ask questions, listen and offer support can be vital. Of course Mum can sometimes be over-protective and make annoying, embarrassing Mum comments – but I’m much rather that than face this roller coaster, long road, alone.
Plus, if like me, you tend to get a little hyper and find the whole process exhausting you may simply need a lift home.