10 Things I wish I’d known when I had my stroke

Vaughn Johnston
4 min readAug 7, 2021


1. Birth Control pills can cause Stroke

This was not something I was aware of prior to my stroke. If I had known, I never would have started them in the first place. I was taking Junel Fe, which is a hormonal oral contraceptive. I wanted to take it so that it would stop my period, which it didn’t even do. In fact, it made my period worse, so it wasn’t even worth it.

2. Smelling Burned toast is a myth

When I was made aware of the first stroke symptom (facial drooping), I legitimately thought, “I can’t be having a stroke, I don’t smell burned toast” and carried on with my work. If I hadn’t thought about that, I could have alerted my supervisor and gotten to the hospital faster and possibly saved my arm and leg.

3. Stroke recovery is an excruciatingly slow and frustrating process

The doctors in the ER rold me that I would make a full recovery. They did not tell me that that could take years. I told my co-worker that I expected to be back at work the following week. I expected that I could relearn how to walk after just a few days.

4. Stroke can happen at any age

I was pretty laissez-faire about the whole situation, so I didn’t question much. It happened, and figuring out why wouldn’t undo the fact that it happened. I remember hearing many of my doctors and nurses commenting on how young I was. I was 29. I now know stroke survivors who have had stroke(s) in childhood and infancy.

5. Your emotions will go all over the place

Like I said, I was pretty laissez- faire about the whole situation. I was pretty even-keel for the first 6 weeks after my stroke. Once I was discharged back home, my mental health started going up and down several times throughout the day, which can be attributed to emotional lability (PBA) and the lack of ability to regulate my emotions.

6. You’re a different person after a stroke

Of course, stroke is a pretty major trauma, so the psychological impacts of having a stroke are going to be strong. However, your brain literally changes as a result of stroke, so likes and dislikes can change, passions and dreams can change, Personality can change. I used to hate pinks and oranges, now I love them. My favorite color used to be purple, now it’s turquoise. I used to hate hip hop and country music, now I regularly listen to them. Musical artists I used to love are lackluster to me now.

7. Continue to do your therapy exercises far longer than you feel you need to.

Use it or lose it. It takes a long time to progress, and far less time to regress. gaining back a movement does not necessarily mean it’s back forever. If you don’t exercise it or do that movement often, you’ll lose it again. For example, shortly after getting home from the hospital, I could lift my left elbow up to shoulder level without pain. Now, it’s much harder and also very painful.

8. You can’t just power through Neuro Fatigue

Post-stroke fatigue, aka neuro fatigue, is real. The simplest tasks can fatigue a stroke survivor. Our brains are in hyperdrive after a stroke. Our brains are trying to heal, function and do the task at hand all at the same time. It’s exhausting. Plus, our brains heal when we sleep, so it’s trying to get us to sleep as much as we can so it can heal. Once we hit that fatigue wall, we’re down for the count, no matter what we try to do. We need sleep more than we did before.

9. You will fall into a depressive state that is lower and stronger than any you’ve experienced before

Mental health after stroke is very important. Not only do many lose the ability to regulate emotions, but many also have what’s known as Pseudobulbar effect (PBA), or Emotional lability, which weakens your ability to hide your emotions. For something so important, mental health is pretty widely ignored in stroke recovery. The hospital/rehab provides you with Neurologists, physiatrists, Physical therapists, occupational therapists, and speech therapists, but no Psychologists. I briefly saw a neuropsychologist in passing at inpatient rehab, but never got a session with her, despite asking.

10. Incontinence is a thing I'll just have to deal with now

With the loss of control on the left side of my body, came the loss of strength in my pelvic floor. While I do have feeling and can tell when I need to go to the bathroom (many survivors aren’t so lucky), I can’t walk very fast, so there’s always a chance that I won’t make it. I am a 31 year old woman who has to buy “protective underwear” (aka diapers). Though, what they’re protecting, I don’t know, because they can’t hold pee for shit.