Today marks the beginning of Multiple Sclerosis Awareness Week in New Zealand. 2026 is the third and final year of Multiple Sclerosis New Zealand’s “Time Matters in MS” campaign which focusses on early understanding, early support and early action for those living with this autoimmune disease.
It’s an important message. Recognising possible symptoms of MS and seeking medical advice early can make an enormous difference, but every time I read the words Time Matters, a small voice in my head wants to add something else to that message.
I did seek medical advice. Again and again for nearly five years until eventually I gave up trying, believing that one day I’d just fall into a crumpled heap on the pavement because I could no longer walk.
September 2026 also marks an important anniversary in my own MS journey. On 22 September 2016, I was taken by ambulance to Christchurch Hospital. Thankfully I wasn’t picked up in a crumpled heap on the pavement but from my home in Diamond Harbour. I was unable to walk, had a feeling as though a band was being pulled tight around my abdomen and I seemed to be losing control of my bladder. The following day a neurologist pulled the curtains around my hospital bed, sat down beside me and told me I had Primary Progressive Multiple Sclerosis. My overwhelming reaction was extreme relief.
That probably isn’t the reaction most people imagine when they think about being diagnosed with an incurable neurological disease. But by then I had seen a legion of doctors, physiotherapists, chiropractors, acupuncturists, Bowen therapists, a neurosurgeon and eventually a psychoanalyst. I had spent thousands of dollars trying to find out what was wrong with me, only to be told that everything was normal, to get a bit of physio and take a couple of Panadol.
My first obvious neurological episode had occurred nearly five years earlier. My right leg became weak and I overcompensated by attempting to take the weight on my left side when I walked. This gave me a peculiar gait which I suspect might’ve caused structural problems of its own.
Over the following years more symptoms appeared along with more attempts to explain them. At various times the problem was attributed to my back, my posture, sciatica, stress and eventually, at least partly by me, to my own mind playing tricks on me.
The nightmare began while I was living in Newcastle, Australia. One particular visit to the Emergency Department at the John Hunter Hospital has stayed with me.
After I had, once again, tried to explain my mysterious symptoms, the doctor who saw me appeared unconvinced. He asked what I was hoping to achieve by coming to the Emergency Department. When I couldn’t answer his question, he then went on to tell me that even if I did have something like (and this was the exact example he chose) multiple sclerosis, they wouldn’t be able to diagnose it then and there. Of all the hypothetical illnesses he could have plucked out of the air, it’s interesting that he chose multiple sclerosis.
He then disappeared for a short while and returned saying that he had been going through my medical records and had noticed something else that apparently troubled him. Why, he wanted to know, had I put myself on the list to have mammograms every year? I was slightly bewildered. I hadn’t come to the Emergency Department with a breast problem! He went on to say that I should be on the usual two-yearly screening programme. I explained that I wasn’t responsible for putting myself on any list. My doctor had arranged the increased surveillance because both of my sisters had experienced breast problems, one going through a mastectomy and chemotherapy and the other having a lumpectomy.
I might not have understood the breast screening connection but I certainly understood the implication. In his mind this was proof positive that I was the sort of person who worried unnecessarily about my health.
The difficulty with being regarded as a hypochondriac is that everything you do subsequently can become evidence for the prosecution. You keep going back to doctors because the symptoms haven’t gone away, thereby demonstrating how obsessed you are with your symptoms.
There is an uncomfortable history behind all this. For generations, women describing physical symptoms that medicine couldn’t readily explain were liable to find themselves labelled “hysterical”. Multiple sclerosis itself has a history of being mistaken for hysteria, particularly before modern diagnostic tools made the neurological damage caused by the disease easier to identify. There is an irony there that’s difficult to ignore.
MS affects considerably more women than men. And many of its symptoms – fatigue, weakness, dizziness, numbness, strange sensations that appear and disappear – aren’t necessarily visible to somebody sitting on the other side of a consulting-room desk.
Once a woman has been categorised as anxious, over-sensitive or excessively preoccupied with her health, there’s also a danger of creating a closed loop. Insisting that something really is wrong doesn’t necessarily challenge the original assumption … it reinforces it.
I’ve been thinking about that recently for reasons that initially had nothing whatsoever to do with MS. I’m a fan of true crime and I’ve been watching and listening to several cases in which women reported what had happened to them and weren’t believed. The circumstances were completely different from mine and I’m not suggesting any parallels between the events themselves, only the way in which someone’s account could be dismissed or disbelieved. It was something about that failure to listen that struck a chord with me. There is something particularly disorientating about knowing your own experience to be real while somebody with greater authority decides that your interpretation of it cannot be trusted. After enough people had failed to find anything wrong with me, I began to wonder whether the problem wasn’t that they didn’t believe me but that I shouldn’t believe myself.
I returned to New Zealand in 2013 and went down the same dismal diagnostic path as I’d done across the Tasman. Finally, a neurosurgeon picked up a spinal disorder and suggested that a spinal fusion along with a laminectomy and decompression would be sure to fix it. I waited hopefully for a year after the surgery but still the symptoms continued.
By the winter of 2016 I was so desperate for an explanation that I had started exploring the possibility that my physical problems were being caused by unresolved emotional trauma. I went to see a psychoanalyst who suggested I write letters to people from my past who had hurt or angered me — letters I wasn’t supposed to send. The letters grew into a sizeable tome while my body continued to deteriorate.
Then in September 2016, everything finally fell apart. My legs stopped working properly and this time there was no possibility of pretending that what was happening was vague, psychological or the result of a dodgy back. I was taken to hospital by ambulance and given an MRI that took in more than just my lower back this time. It included my brain and spinal cord and it was there that lesions were found.
I remember lying in my hospital bed the following day, absorbing the news that I had Primary Progressive Multiple Sclerosis and feeling relieved that it was real. I hadn’t imagined it. I hadn’t exaggerated it and I hadn’t somehow thought myself into being unable to walk. It had a name. I could discuss it with professionals who were familiar with the disease and could talk to me about management and treatment. After nearly five years, I could finally stop looking for an answer … I had one.
I remember thinking about some of the people I had encountered over those previous years. The various GPs and specialists I’d seen. The neurosurgeon who operated on my back, who I can’t help thinking should really have known better. And, of course, the Emergency Department doctor who had accidentally chosen multiple sclerosis as his hypothetical example of something I might imagine I had.
I wanted to write to them all.
Dear Doctor Who Thought I Was a Hypochondriac,
It was Multiple Sclerosis.
Kind regards,
Claire
I didn’t, of course, and ten years later I’m rather glad that I didn’t, because something else happened after that diagnosis. I got better. Not better in the sense of MS disappearing completely – I still have mobility problems along with a certain degree of pain and discomfort. I’m known to get slightly nervous if I’m not within dashing distance of a toilet. Fatigue can wipe out plans without consultation and dizziness can make the world behave in ways I would rather it didn’t. But compare me with the woman lying in that hospital bed ten years ago and I am doing pretty well, all things considered.
Back then I couldn’t walk. I couldn’t drive my car. I had no idea what my future was going to look like and, after years of searching for answers, I barely knew which way was up. I had to learn to walk again. I had to relearn how to manage ordinary daily tasks. Eventually I got my driver’s licence back and began to work part-time. Since then I’ve gradually managed to rearrange my life around MS.
I’m being treated with ocrelizumab, initially as an infusion every six months and now as a much quicker subcutaneous injection. My MS is currently considered stable. I can’t say definitively that this is because of the drug because I can’t run an alternative version of my life alongside this one and discover what would have happened without it. But I’m enormously grateful that the treatment exists and enormously fortunate that ten years after diagnosis, I can describe my condition as stable.
There are things I can’t do now that I once took for granted and there are things that require more planning, more time or considerably more determination than they used to. MS places limits on my life, but it no longer dominates it and I feel so much better than I did ten years ago.
Better doesn’t necessarily mean cured. Sometimes it means knowing what you’re dealing with instead of waking every morning wondering what on earth your body is going to do next and why nobody seems able to explain it.
That’s why I wholeheartedly support the message behind Time Matters in MS. If something unexplained is happening to your body, particularly if you are experiencing neurological symptoms, seek medical advice. Don’t assume it will go away. And don’t do what many of us are tempted to do and convince yourself that you’re making a fuss about nothing. But perhaps, ten years after my own diagnosis, I would add something to that message.
When people do seek help they need to be listened to, not told to get a bit of physio and take a couple of Panadol. Or worse, be made to feel as though they’re trying to get attention by making their symptoms up.
I’m not suggesting that every unexplained symptom means there is an undiagnosed disease lurking in the background. Anxiety often does produce physical symptoms. Stress can make people ill. Sometimes a bad back really is just a bad back.
And sometimes the person who keeps coming back isn’t obsessed with being ill. Sometimes they keep coming back because they’re still ill.
Time matters in MS. So does being heard.
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