My MS diagnosis story
‘Are you planning on becoming pregnant?’ The doctor asks.
My partner and I stare at each other blankly. We had never discussed it, now I was about to make a major decision, I had exactly 20 seconds to think about it, and I didn’t even know why I was being asked.
My MS diagnosis story
This post was originally going to be just about me having to decide between medication and having children, but I can’t get into that topic without telling you my Multiple Sclerosis (MS) diagnosis story first, as two events overlap.
This will seem like it goes a bit off topic at first. I need to tell this story so I can give you a bit of background that is actually quite important to my overall story.
We need to go back 7 years to when I was diagnosed with Multiple Sclerosis. There is a lot to write about regarding what led up to my MS diagnosis. I’m going to break things down into point form for this post just to prepare the scenario. I promise to write about this in more detail in future posts.
– Easter 2010, out of nowhere, I developed manic/psychotic-type symptoms.
– I was admitted to hospital and doctors began investigating organic factors for my psychosis. That night I freaked out, ripped out all my IV lines and trashed the room I was in. This got me shipped off to the psychiatric unit where I remained for two months.
I have no recollection of anything over that two month period, and after 7 years I still don’t.
The reasons for my sudden illness are still unknown. I may have suffered from a brief reactive psychosis due to stress and lack of sleep, it may also have been a case of hyperthyroidism (I was discovered to have this during an almost similar incident) or it could have been my first presenting symptom of Multiple Sclerosis.
I want to write about these events in more detail from what I’ve been able to find out from my medical notes. I need to learn to read doctors writing firstly, then bring myself to narrate these events from a perspective I don’t even remember. So I’ll need a bit of time. I will get to it as it’s major driving factor behind my work as a Mental Health peer worker.
Ok, let’s get back to where we left off.
Remember how I said the cause of my psychosis was being investigated for organic factors. The hospital had attempted an MRI which they had to abandon because manic, confused patients aren’t happy to chill motionlessly for an hour in a tube. Another MRI was organised when I was being more ‘cooperative’ (doped up on antipsychotics). That’s where they discovered the lesions. Not your usual route of diagnosis for Multiple Sclerosis. Anytime I tell a new doctor my diagnosis story they insist on re-diagnosing my MS because they think I have it wrong. Mention that you were in a psychiatric facility, and it tends to make you unbelievable for some reason.
When the results of the MRI were available, I got a letter from the hospital summoning me to the neurology unit. As I had just dealt with the psychiatric unit up until now, I was thoroughly confused.
As I was fresh out of the psych ward, I went in with my partner at the time as he was asked to be my watcher, so he pretty much went where I went.
Choosing Between Medication or Children
We sit in front of the neurologist, and without introducing himself, he asks who I have with me today.
“My partner,” I reply.
“Are you two planning on becoming pregnant?”
This is where the blank stares begin.
“No!” I say this without a thought to what’s coming out of my mouth, it’s an automatic reflex I have to this question. I looked over to my partner worried that I might have answered that a little too stoically. He seemed ok…phew.
“We’re concentrating on other things,” he says … Good answer.
Next, my mind goes into a tailspin…why on earth is he asking me this? What’s this got to do with neurology? Did they find out I was pregnant in the MRI or something? That’s not even possible, or is it? I scramble to recollect what has happened in the last two months. Nothing … I have no memories.
The doctor looks happy about our answer.
“Good, because you have MS and I want to start you on medications right away”.
Oh that’s good, is it? Doctors have such a way with words.
My blood runs cold. MS was the disease I was most afraid of. Women in wheelchairs would come to my primary school during the MS read-a-thon. They would tell us about having their lives taken away by MS, asking us to help raise money for a cure … because there wasn’t one. Stories of hope didn’t raise money back then I suppose. This was my worst fear from childhood, an MS diagnosis was my boogie man.
I soon forgot about medication or becoming pregnant. “Will I end up in a wheelchair?” was the only thing I could think of asking.
That is my MS diagnosis story.
I challenge anyone to come up with a worse way of telling a patient they have been diagnosed with an incurable illness. I’ve come to learn since then that specialists don’t have the best people skills.
This leads us to the main subject I want to discuss today. Having to choose between medication and children, this is going to be part 1 of this topic. And in part 1 of the story, I have only seconds to make a decision, and I chose without any thought to the question at all. You see I was 28 and completely career orientated. This did not require thought.
The point I want to make is one should not feel forced to make a split-second decision like this, even if they are positive of their choice before receiving such news. Do I really need to decide to take medication right then and there? Am I at risk of dying if I don’t? Then let me go somewhere, process the news. Talk to someone, and get back to you on that. Surely starting immunotherapy can wait a day? At the time none of these things dawned on me, nor was it suggested I rethink my answer now that I’ve been told I have Multiple Sclerosis.
I started to feel differently a few years later. Not so much about having kids. The whole MS thing only gave me more reasons not to have children. I felt angry about feeling like I was given a lack of choice by being put on the spot. I also became infuriated with how the subject was approached. Why not mention the MS diagnosis first? And what if I did want kids!? There was no counselling offered to help me make a decision. I hadn’t even been explained if there were going to be long-term repercussions to my fertility in the future. What if I change my mind? Could I come off medication later on in life? I didn’t know anything, I made that choice completely uninformed. I also wasn’t given the opportunity to ask for more information. Back then a doctor said jump, I said how high. Especially coming straight from a psychiatric ward, where I didn’t have a choice in the treatment I was receiving.
Now I’m 34 and what I said would never happen is happening. I’m not 100% convinced about not having children. I want to know what my options are. So in part 2 of this topic, I want to start tackling that side of the equation. This time with a bit more time to think about my choices and experience on my side.
What was your MS diagnosis story and how was the topic of having children approached for you? I have a feeling that being put on the spot and being asked to make uninformed decisions is not a story unique to me.
This and many other events on my MS journey have made me a firm believer in self-advocacy. It’s not an easy thing to do as we aren’t really encouraged to question or explore medical decisions, they are made for us. A patient does as they are told. I don’t see myself as a patient anymore. That term is outdated, I’m a health consumer, I have rights and need to be included and supported to make informed decisions regarding my health. You can read my guide on self-advocacy techniques in my past post self-advocacy 101.