MS: Feeling seen doesn’t always mean feeling heard

For some time now, I’ve felt as if multiple sclerosis has brokered a deal between accountability and reality. It’s not just the quiet moments when I need to pause and reflect on the past twenty years, but it’s also essential to know how those twenty years might change the next twenty years.

The result?

LGO.

Back to when ‘Life Goes On’ was still a catchphrase, to convince myself that having a neurodegenerative illness was doable as long as I listened to its background noise carefully enough.

Being heard

Around the time of medical earthquakes, it is essential to feel seen and heard, not only in your neurologist’s office but also at home, at work, and in your circle of family and friends.

Just after hearing my neurologist say that I indeed have MS, I walked out of the hospital, saying, “Sure, I thought that would be worse!” The first lesson in denialism 101 had set in almost immediately. “Who? Me? MS? Nah… Yeah, let’s go for dinner!” The friend who accompanied me to the hospital recognised that I needed a safe landing space, best served over Italian food and in the company of friends who already knew that my journey would require more than just a soft landing. Denial is quite easy to slip into when the whole world crashes into yours and time and space have yet to catch up.

When you are someone who prioritises others’ needs over your own, now is the time to say, “Stop!” Now is the time to speak up and ensure that you are given time to express your thoughts, worries, and doubts.

Being seen

As importantly, you should be allowed to be seen when you are physically able to; if not, those around you should understand that you are not the same person you used to be.

Granted, you didn’t ask for a chronic illness that clearly can’t be cured, especially when your loved ones are equally carrying a burden they didn’t ask for or need.

Despite this, I often refer to MS as a lonely illness. With a vast array of associated neurological and non-neurological symptoms spread over four different types of MS, it will be challenging to find someone who has the exact same symptoms with a similarly matched field of outcomes.

Unless someone in your circle has MS as well, you will find the months after your diagnosis a vast and deep lonely field of experiences, overshadowed by improbable expectations.

Being heard

It was safe to say that to begin ‘My Life 2.0’ was to create a baseline and slowly build a new set of experiences, where being seen and heard took centre stage.

For example, when I first experienced vertigo a few months after my diagnosis, I was walking back to my desk after having lunch at work. Suddenly, it felt like the floor under my feet was heaving up and down, and tilting from left to right. In a panic, I called my MS Nurse. This was a whole new sensory symptom that didn’t make any sense. I never drink alcohol, but I imagined this must be what a drunken stupor feels like. She told me to contact her anytime if I had any questions, and considering this was a new symptom, it must have been a new exacerbation (relapse; attack). My MS nurse explained that not every new symptom was a new exacerbation, and that new or worsening symptoms didn’t always require immediate hospitalisation. She explained that a relapse is only made official if the symptoms last over 24 to 48 hours, and to contact her again if vertigo is still present in a couple of days.

When the phone call was over, I only felt slightly heard. So much had happened in the past 3 to 4 months that I couldn’t recall when to call a set of symptoms a relapse, or when a trip to the Emergency Department was necessary. So many questions about neurodegenerative illnesses were under lock and key inside my mind, and right now, I was unable to remember answers when I needed them the most.

As expected in any new severe diagnosis, finding my feet in an avalanche of new, daily experiences took months, especially as Ireland was my adopted home and I had minimal experience in how to navigate medical and pharmaceutical services. Being heard felt like a fight I had no energy to finish. Feeling seen, as time would show, became an even more brutal fight, made worse by severe fatigue, which to this day remains impossible to handle.

Mind you, twenty years post-diagnosis, I still require moments of quiet and private teaching when a new sensation drops in to say hello. Case in point: neuropathic pain in the soles of both feet while lying down, which will require some online research before I see my primary physician and neurologist.

But, I digress.

The first year after hearing, “You have MS,” will be the most consequential. You need to learn how to locate your neurologist, physiotherapist, ophthalmologist, and any other medical specialists to whom you might be referred. You need to learn how to self-inject, schedule medication intake, and find a pharmacy that can deliver your monthly bag of medication in case you are unable to pick it up. Your family, friends, and colleagues will be close allies when you suddenly feel neurological symptoms pop up. You might also wonder if your HR department should be informed of your diagnosis. Speaking from personal experience, involve them in your new journey; they might be willing to adapt your workstation, workload, and schedule. My very first symptoms started with a bang—trigeminal neuralgia. Severe fatigue followed, and left side neuropathic pain became more severe while I was at the office. I explained to HR that these symptoms were unlike anything I had been through, and that I would work as much as possible until a diagnosis was found. Luckily, 5 months later, bingo. My company was understanding and willing to make a transition to help me stay employed. I felt heard and understood, which eventually helped me stay for another 4.5 years post-diagnosis. When they eventually required me to visit an occupational doctor to assess my future work capacity, an Irish MS Society consultant accompanied me.

Before the whole MS saga began, I considered myself a quiet human being who loved helping others and who was at times afraid of upsetting loved ones, so I stayed quiet whenever I felt I needed to. Going through the throngs of an incurable, progressive neurological illness, however, taught me that A) I needed to speak up about why and how I wasn’t the same person anymore, and B) I needed to be heard. Because of suppressing my worries, questions, and feelings, symptoms worsened, and I ended up in a vicious cycle of having to explain and wanting to be heard.

Speaking up and needing to be seen and heard became a work in progress, which is still ongoing. When unreciprocated, feeling unseen, unheard, and disconnected from the outside world can lead to fractures in the ties that would normally bind us.

Friends, family members, and colleagues listened as they gained insight into my life, understanding that if they were genuinely interested in my well-being, they only needed to ask or conduct research on reputable medical websites.

For example, a family member said I needed to stop wallowing in self-pity because they believed that was all I did (answer: there is a trove of proof out there that counters their ideas 100%). A colleague said it must have been great being on sick leave so much that it felt like being on holiday. Two friends told me they couldn’t deal with my illness, so they eventually began dropping into oblivion until we lost all contact.

What I learned was that I didn’t need their approval to do what was most beneficial for my health or to make decisions that would help me be the best person I could be. Boundaries have been broken beyond repair, and that is okay with me. MS is a lonely illness, but you set the boundaries of what can and can’t enter your neurologically challenged world.

If you feel more at ease writing, why not start a journal or blog? Finding my voice in a whirlwind of neurological, professional, and societal changes has been my saving grace, which is why I created this blog over a decade ago and have been advocating for those unable to speak up.

Be yourself, embrace yourself, and express your emotions honestly and confidently. Set boundaries where needed that protect your well-being. Your unique voice and the care you extend to yourself and others are gifts MS gave you, something you never thought possible.