Life with MS: don’t let people steal your identity

As I navigate the challenges of staying awake at 11 AM, I just had a heartfelt chat with a friend who recently faced some dark times. She said she was tired of others questioning her health and, in turn, her self-worth. She reached out for some insights from my two decades of living with MS, infused with plenty of personal experience, as I, too, have faced similar doubts and misunderstandings. This is how I remembered reading an article by Nicole Lemelle, writer of My New Normals, who once said this:

“Multiple Sclerosis robs us of our outside roles and independence. Which most times amounts to our identities”.

Over time, I discovered the importance of letting go of the endless questions about the where, when, why, how, and what of my life with MS. I also learned to distance myself from those who questioned my journey in ways that no one should ever experience—like being told you’re faking an illness or that you should just get over it because, after all, “You aren’t MS, you just have MS.”

As if I wasn’t already aware of that.

While I know a lot of those memories are now just sawdust in my head, just like my friend and Nicole, the feeling of stigmatization is a real one, especially when you have invisible disabilities when you don’t sit in a wheelchair (yet). It is also the reason why society at large feels it has the right to question your medical status, whether asked for or not.

Therefore, the feeling of guilt is an experience that many people with MS struggle with in different ways, even when we cannot begin to grasp why we are being questioned in the first place.

My own sense of ‘being normal’ has changed entirely over the past 20 years, and I can hardly remember what it feels like to be “normal.” It may sound dramatic, but at face value, it is, and I say this without feeling sorry for myself. It is simply a matter of fact that the lives of those with MS have been driven off the cliff and into the unknown, unaware if there’s a safety net on the other end.

One example of the impact on people’s lives is this: I’ve met the partners of people with MS who attend MS conferences without their spouses because they cannot accept their illness, even years after diagnosis. They fear being confronted with the worst-case scenarios and what their future might look like because the quiet nature of the disease is felt loud and clear and rolls like thunder in the bodies of those who experience neurological symptoms so numerous, so rare, they feel there’s no way out.

My first MS conference was an eye-opener shortly after my diagnosis as I met people from the Irish MS Society and other patients, forming lasting bonds that endure despite space and time apart.

Twenty years after my diagnosis, an unpredictable life of plenty of recurring, disappearing and again recurring, debilitating symptoms is like being on a rollercoaster in the dark. Add weeklong hospital admissions in an isolation room because of a rogue immune system, and you begin to paint the ceiling of a hospital room with memories of the Sistine Chapel in Rome using my eyes only.

Didn’t I mention that life with MS can also be fun if you let it? Imagination is key, and determination is a must.

Not fitting the mould of what society expects of you can be daunting and, as such, is not something to cheer about. It is especially painful when such judgment comes from the mouths of family, close friends or colleagues, and as a consequence, it gives you enough experience to know how to push through it should it happen again.

People’s actions can hurt like daggers through your heart in two ways: either people say too much out of ignorance, disbelief or arrogance. The most hurtful thing, however, is despite people knowing you have a chronic illness, they’d rather not know and, therefore, stay as quiet as a mouse in a barn guarded by a wild cat.

Like Grace Jennings-Edquist wrote in the Guardian in 2023:

In everyday life, us invisibly ill folk are often expected to explain our illnesses to justify our accessibility needs, and we’re routinely disbelieved or suspected of exaggeration. In short: chronic illness can feel incredibly isolating. By failing to acknowledge a friend or family member’s condition, you may be inadvertently pressing on that wound.
I’m not after lashings of sympathy. I don’t require flowers or a gold medal for being Endlessly Ill. But when your life is turned upside down by a diagnosis – when your world shrinks to a tight schedule of hospital admissions, hardcore medications, restricted mobility and post-operative pain – an occasional acknowledgment can feel both comforting and validating.

I lost credibility with those I considered friends for life because they believed I could not possibly be that ill. Like my friend said earlier today, the looks on people’s faces speak volumes when she is happy and when, god forbid, she dares to laugh out loud.

Losing credibility can be a painful experience, but consider this: you wouldn’t question them if they were genuinely unwell, and worse still, I wonder if those who judge you would dare to question someone facing cancer in the same manner? I presume not!

Instead of breaking people down by questioning the validity of their illness, aim to see the strength it takes to get up and try to go about their regular, daily business, forced to create new normals to get by. In this way, MS has limited the ability of many people to look and plan beyond tomorrow or the day after. Take it from us: the will is there to do things; we just don’t get the access key whenever we want or need it.

Multiple Sclerosis behaves like an identity thief, trying to steal the best aspects of your life at its height. If you ever feel alienated, know that you aren’t alone. It’s vital to raise awareness among those around us while also finding new interests that match our current abilities and sharing our experiences to help others with MS. Although there are just 2.5 million people worldwide who share our illness, we can shout loud enough to make others look up and learn about what ails us.

MS may try to take away your identity and independence, but never let it destroy your worth. An MS diagnosis is mentally, emotionally and physically rough and painful, but it is a moment in time that allows you to hit the reset button. Sure, it is one hell of a big red reset button, but it will enable you to add days to your life, as well as self-love and strength.

I may have forgotten what it feels like to be healthy or “normal”, but my body has become a source of many new and uplifting days, something I didn’t think possible on the day of my diagnosis.

More on this subject:

How Do You Deal With Relatives Who Don’t Understand Your Chronic Illness

11 Constructive Ways to Respond to People Who Doubt Your Illness

Do You Have Trouble Letting Go?

2018 Winner Best Blog Post, Ireland Blog Awards by Ashville Media Group, Dublin, Ireland

◾ Everyday Health: Top 10 MS Blogs to Follow in 2023, 2022, 2021, 2020, 2018
◾ Feedspot: Top 45 Best Multiple Sclerosis Blogs and Websites in 2025, 2024, 2023, 2022, 2021, 2020, 2019, 2018, 2017
◾ My Therapy: Multiple Sclerosis Blogs: 10 of the Best
◾ MyTherapy: Best MS Blog for Simplicity 2018
◾ Blog Awards Ireland: Winner Best Blog Post 2018; Finalist 2017, 2015, 2014;