In my last post I said something in passing I’d like to talk more about. I’ve had an MC4r deficiency diagnosis for about eight years and in that time I’ve only met one other person who has heard of MC4r. This encounter happened while in the waiting room of a hospital while I was waiting to see my neurologist regarding my migraines. My mum who seizes every opportunity to talk about MC4r (she’s quite the advocate) despite not fully understanding it or knowing how to describe it, stuck up a conversation with another patient who coincidently had a granddaughter who had been given an MC4r related diagnosis.
My mum will talk about MC4r to pretty much anyone who will listen, and always gets me involved in these conversations because according to her “I’m the expert” because I know more about it than her, however never once have I claimed to be an expert at anything. I have my own way of understanding and explaining MC4r, but I’m no way am I am expert, I am by my very nature a patient.
If you’ve had a weight problem at any point in your life, you’re probably familiar with a few of these phrases “YOU need to go on a diet”, “YOU need to make better choices”, “YOU need to lose weight”, “YOU need to exercise more” or “YOU need to watch your sugar intake” etc… All these phrases typically start with YOU because in the minds of most people and medical professionals, you are responsible for your weight.
Most doctors, especially your general practitioners, which are the ones you’ll be most familiar in dealing with, have this amazing ability to look at weight as a series of lifestyle choices and not as a symptom of a disorder. Therefore they immediately place blame onto the patient. I’ve spent my entire life being told by doctors that my weight problem was my fault; which naturally had a massive impact on my mental health.
The fact doctors lack the knowledge of disorders such as those related to MC4r is damaging to patients. Every time I meet a doctor I ask them if they’ve heard about MC4r related disorders and they ALWAYS say no. They also always claim to research the disorders following our conversation and I genuinely don’t believe that they do. Nothing changes when I see them again, there is always a lack of understanding.
When I tell a doctor about MC4r, I want to be understood. I don’t want to hear things I’ve heard 100 times before like they’re the first doctor to ever say it to me. I want them to know that I’m trying to lose weight, I’ve been doing it for a LONG time but it’s not as easy and eating right and going to the gym. I’m hungry ALL the time, I think about food ALL the time and it’s INFURIATING. For once please just sit back and LISTEN TO YOUR PATIENT; because listening to me now might just help someone else later. You might notice someone else’s symptoms sooner. Just listen that’s all you have to do.
It saddens me that doctors are so unwilling to look past lifestyle factors when it comes to weight. For many, weight does boil down to lifestyle choices, for example I knew someone at school who ate McDonalds everyday for lunch. That’s a person making bad choices. But for some of us, that 22% of the population who suffer because of MC4r more investigation is needed by doctors so they’re not dismissed as lazy when all they do is try. A patient shouldn’t have to suffer mentally because a doctor isn’t willing to look further. Why should a patient have to convince a doctor that their weight is a symptom and not a choice?
There are two sad truths to this of course. One is that a person has to know and understand their own body, to also consider their weight a symptom and not a lifestyle choice. The second is getting the doctor to take you seriously. There is a good chance you will have to fight for a diagnosis. Eight years after my diagnosis and I’m still fighting to be understood by doctors because when I tell them about MC4r, it falls on deaf ears – they listen but don’t hear me. To most doctors weight will forever be the patients fault.
That’s actually the third sad truth. A diagnosis won’t change a doctors perception on your weight. As long as they remain uneducated on the matter, you weight remains an unhealthy aspect that needs changing in their eyes.
I’m hoping that as treatments such as those being developed by Rhythm Pharmaceuticals are released that more doctors become aware of MC4r. I’m hopeful that one day I’ll walk into a doctors office and say: “I have MC4r” and the doctors says: “I know what that’s is.”
Maybe one day that will happen.
MC4r and ME 