Here’s something I wish someone had told me early: denial after an MS diagnosis doesn’t always last a few weeks. For a lot of people it lasts years.
I’ve had MS since I was 19, and I work with people who live with it. Some of them were diagnosed last month. Some were diagnosed a decade ago and have only just started to say, quietly, that they think they’ve been avoiding it the whole time. If that’s you, this post is for you. There’s nothing wrong with you. Let’s look at what’s going on.
Is Denial After an MS Diagnosis Normal?
Yes. Denial is one of the most common ways people cope with a diagnosis this big, and it’s far more common than anyone admits.
You get told you have a lifelong neurological condition, and then you’re expected to go home, make dinner and go to work on Monday. Part of you simply can’t take it in all at once. So some part of you carries on as though it isn’t quite true. That’s not stupidity, and it isn’t weakness. It’s a way of protecting yourself while the rest of you catches up.
The part nobody mentions is the timing. We’re led to expect that you work through it in the first few weeks and then you’re “accepting”. For plenty of people it doesn’t go like that. If you want to read about the first stretch, what the first few weeks feel like is a good place to start. This post is about what happens when it doesn’t end there.
What Does Denial Look Like With MS?
Denial with MS usually doesn’t look like saying “I don’t have MS”. It looks like a hundred small, reasonable-sounding things.
You might recognise some of these:
Carrying on exactly as before, and treating anything that changes as a one-off
Telling yourself it’s probably not that bad, or that other people have it far worse
Not reading about it, not joining anything, not looking at what comes next
Telling hardly anyone, or telling people in a way that makes it sound smaller than it is
Going to appointments and nodding, and leaving without having taken much in
Saying “I’m fine” on reflex, and half believing it
A feeling that it’s happening to someone else, or that the diagnosis doesn’t quite fit you
Notice that most of these are things a capable, busy person does. That’s part of why it can go unseen for so long, including by you.
I’m not a doctor, so I’m not going to tell you what to do about your treatment or your symptoms. That belongs with your neurologist or MS nurse. What I’m talking about is the emotional side: how you’re relating to having MS at all.
[EMILY TO CONFIRM: a short line of your own here about what denial looked like for you, in your words. Leave it out if you’d rather not. I haven’t made anything up for you.]
Why Can Denial Last for Years?
Denial can last for years with MS because MS makes it easy to keep up.
For many people, MS is invisible. Symptoms can come and go. There can be long stretches where life feels close to normal, and each good stretch quietly says: see, it’s not really that bad. Meanwhile the world keeps asking you to function. There are kids, a job, a mortgage, people who rely on you. When you have to keep going, the easiest thing to do is keep going and not look.
There’s another reason too. Looking at it properly means feeling it. The grief, the fear, the question of who you are now. Putting that off can feel like the only way to stay upright. If you’ve been doing that for years, you’ve been doing something very human, and probably doing it while looking after everyone else.
Seeing it clearly is worth being gentle about. It usually isn’t a switch that flips. It’s more often a slow, uncomfortable “oh”.
Is Denial Always a Problem?
No. Denial is not always a problem, and sometimes it’s exactly what gets you through a hard season.
If your life is full and you’re coping, you don’t need to dig up feelings for the sake of it. I’d never tell someone to take their defences down because a blog post said so.
It tends to cost something when it’s keeping you quietly stuck. For example, when you’re exhausted from holding the story together, when you’re avoiding conversations or information you actually need, or when you feel oddly flat, anxious or short-tempered and can’t say why. Those are signs there’s something underneath that wants some room. Nothing is wrong with you for noticing. It might just mean you’re ready.
If you’re making decisions about treatment or appointments, please take those to your neurologist or MS nurse. Denial, when it’s there, deserves a kinder place to land than being told to snap out of it.
What Helps When You’re Ready to Look?
Starting small helps most. You don’t have to take in all of it at once.
Say one true thing to one person. Not the whole story. Something like “I think I’ve been avoiding thinking about this.” That can be a friend, a partner, or someone you pay to listen.
Let yourself be curious rather than frightened. You can look at it for five minutes and put it down again.
Expect feelings to arrive. When denial loosens, grief and fear often come in behind it. That’s not a setback. It’s what was waiting. If it helps, MS and grief, fear of progression and identity loss each go into one of them.
Don’t do it alone if you can help it. Carrying MS in silence is its own kind of heavy.
Counselling can’t take MS away, and it won’t make the feelings disappear. The neurologist treats the disease. I treat the grief and the fear that come with it. What I can offer is someone who’s lived with MS for nearly 20 years, so you don’t have to explain the basics or soften it for me. If you’re wondering whether it’s worth it, here’s an honest answer, and counsellor or psychologist explains the difference.
You Don’t Have to Figure This Out Alone
If you’ve read this far, some part of you is probably ready to look, even if only a little. That’s enough to start. You don’t need to have it worked out, and you don’t need to be certain that “denial” is the right word for what you’ve been doing.
A first conversation with someone who actually gets it is a reasonable next step.
Initial Consultation: 40 minutes online via Zoom, $89.
This post is general information, not medical advice. Please talk to your GP, neurologist or MS nurse about your symptoms and treatment. Em West Multiple Sclerosis Counselling is not a crisis service. If you’re in crisis or thinking about ending your life, please reach out now: Lifeline 13 11 14 (Australia), or your local emergency number (000 in Australia), or your local crisis line.
