Important note: This page is about life after stroke. If you think you might be experiencing a stroke right now, please seek immediate medical attention.
If you’re here because you or someone you love recently had a stroke and you’re feeling overwhelmed, I get it. Here are some of the things I wish I’d understood at the beginning.
The Basics
What actually is a stroke?
In simple terms, a stroke is an injury to the brain caused by a problem with its blood supply. There are two main types of stroke:
- Ischemic stroke: When a blood vessel supplying the brain becomes blocked by a blood clot, cutting off oxygen to the brain.
- Hemorrhagic stroke: When a blood vessel in the brain ruptures and bleeds, damaging brain tissue.
You may also hear about a TIA (transient ischemic attack), often referred to as a mini-stroke. TIAs are often a warning sign of a future larger stroke and should be taken seriously.
What a stroke looks like depends heavily on which parts of the brain were affected. Thus, every stroke and recovery looks different.
Do young people really have strokes?
Yes. Babies, children, teenagers, and young adults can all have strokes. However, having a stroke while young is rare and understandably jarring.
A commonly cited statistic is that 10% of ischemic strokes happen in individuals under 50. If you’re anything like me, you’re probably thinking “but that’s still a broad range!” And you’re right. Stroke risk increases dramatically with age, even within the “young stroke” category. Research has estimated the annual incidence of ischemic stroke in people under 35 at around 1-5 in 100,000 people, compared with roughly 33 per 100,000 among 45-49 year olds (source).
So, does it happen? Yes. Is it rare? Also yes. Welcome to a very select club of unlucky people.
Important note: estimates vary considerably between countries, populations, and studies. Research also suggests that the incidence of stroke among younger adults has increased in recent years, so these number should not be treated as universal or fixed.
Why did this happen to me?
If you’re anything like me, not knowing why this happened can be the scariest part of having a stroke.
There isn’t one explanation for why young people have strokes. Some people eventually get clear answers, while others go through extensive testing and still never identify a definitive cause.
The possible causes also depend on the type of stroke you had. Here are some of the most common causes of stroke in young people (note that this is not an exhaustive list):
- Artery dissection is one of the leading causes of stroke in young people, and it can either be spontaneous (unprompted) or caused by an injury. The following put you at higher risk of a dissection:
- Fibromuscular dysplasia
- Connective tissue disorders, particular vascular Ehlers-Danlos Syndrome
- Heart-related causes: a stroke can happen when a blood clot forms in or travels through the heart and reaches the brain. Potential causes and risk factors include:
- Atrial fibrillation
- Heart valve disease
- Cardiomyopathy
- Structural heart problems
- PFOs (patent foramen ovales) are also frequently discussed in young stroke patients. While they are a potential cause of stroke, it’s important to note that they are very common (~25% of the general population), so finding one does not automatically mean it caused your stroke.
- Blood clotting and blood disorders, such as the following, can increase your risk of ischemic stroke
- Antiphospholipid syndrome (APS)
- Inherited thrombophilias such as Factor V Leiden
- Sickle cell disease
- Blood vessel disorders can increase your risk of stroke
- Arteriovenous malformation (AVM) is an abnormal tangle of blood vessels that is often associated with hemorrhagic stroke
- Vasculitis
- Moyomoya disease
- Pregnancy, postpartum, or hormones
- Pregnancy carries an increased risk of stroke because of changes in blood clotting
- Estrogen-containing hormonal contraceptives carry a mild increase in ischemic stroke risk, although this is less common. The absolute risk for young people is low but can become more important if combined with other risk factors (such as smoking or migraines with aura).
Sometimes, doctors can’t find a cause. You could go through hundreds of brain scans, heart monitoring, blood tests, and genetic testing and still not get a satisfying answer. When a stroke has no identified cause after evaluation, it may be described as cryptogenic. One study even found that 57% of strokes in those under 30 years old are cryptogenic (source).
Causation is complicated. It is easy to blame yourself, but your stroke is not your fault. Having a risk factor is not the same thing as being responsible for what happened to you. Whether your stroke has a clear cause or not, it is normal to feel angry or sad that this happened to you.
If your doctors haven’t identified a cause, useful questions to ask are: What causes have been ruled out? What do you think is most likely? Is there any additional testing that would be appropriate for me? Without a known cause, what options are available to prevent a future stroke?
Will this happen again?
Having a stroke is a traumatic experience, and when you read about all of the scary stats online about stroke recurrence, it’s easy to spiral. It’s completely understandable to be scared, especially when having a stroke at your age may have seemed unimaginable. Unfortunately, there isn’t one number I can give you for the likelihood of recurrence (I know, I know). Your individual risk depends on what caused your stroke, your underlying risk factors, and whether your cause and risk factors are being managed.
It is true that having had a stroke puts you at a higher risk for another stroke. But as you may have guessed by now, stroke recurrence stats are based on ALL stroke survivors. I won’t share overall stats because there isn’t one useful recurrence statistic for our age group, but it’s fair to say that the stats you see online likely don’t accurately represent the risk for a young stroke survivor.
If your stroke was caused by an artery dissection, the risk of another dissection is 1-2% per year (source). It’s important to note that this is just the risk of another dissection. Not every dissection leads to a stroke.
The risk of recurrence for you depends on the specific stroke you had. The good news is that one of your medical team’s main priorities after a stroke is prevention. If they can figure out why your stroke happened, it will be a matter of managing it. If not, there are still options available, such as antiplatelets or anticoagulants, or managing your risk factors.
One important thing I want to note: your fear is not irrational. You’ve already had a stroke, so your brain knows it can happen again. Learning how to live with this knowledge is one of the hardest parts of recovery. If it’s any consolation, I’ve personally found that the fear decreases with time.
What does stroke recovery look like?
The true answer, which you’ll probably hate, is that it depends. But let’s breakdown what it can look like.
The focus of your recovery will depend on where in your brain the stroke occurred, how much damage was caused, and what your associated deficits are.
In the very beginning, recovery likely looks like slowly working to regain basic abilities. It could mean relearning how to walk, talk, write, use one side of your body, or keep your balance. Your team may include some combination of physical therapists, occupational therapists, speech therapists, psychologists, and other specialists.
A common misconception is that nearly all of your progress will be made in the first three months, and I am here to tell you that that is NOT true. Recovery isn’t linear. It is true that recovery is fastest in the first few months because of neuroplasticity, but you can continue to make progress for months and years after your stroke.
Many stroke survivors receive inpatient rehab, which I recommend if it is available and appropriate for your situation. Afterwards, you will likely continue working with various specialists outpatient, while completing therapy exercises at home. It is also so important to rest during this period while also pushing yourself to try new things.
How long will recovery take?
This depends on how you define recovery. Personally, I choose to see it as a life-long process, but I know that’s not the answer you want to hear. The truth is that there is no universal stroke recovery timeline.
You’ve probably come across the idea that most recovery happens within the first three or six months. While there may be some truth to this (recovery is often fastest right after a stroke), recovery does NOT end at three months.
Research has shown that people can continue improving months and even years after a stroke. Reaching an arbitrary date on a calendar does not mean your brain suddenly loses its ability to change.
This is also a tricky question to answer because there are so many aspects to recovery. You may regain your ability to walk relatively quickly, but have stroke fatigue that lingers for much longer. You may feel physically recovered but still struggle with emotional effects of what happened to you.
Sometimes, recovery means adapting to a new normal rather than returning completely to your old life. This can be incredibly frustrating to accept. For me, reframing my idea of recovery and accepting that I may never “go back to normal” has become part of the recovery process itself.
Why am I so exhausted?
Stroke fatigue is very real. In the months following my stroke, I would constantly get frustrated at how “little” I was able to do without needing to rest. However, post-stroke fatigue is an incredibly common part of stroke recovery.
Stroke fatigue is not just “being tired.” It can feel disproportionate to what you’ve actually done and usually isn’t something you can simply sleep a way. After a stroke, everyday physical and cognitive tasks can require significantly more effort than they did before. Rehabilitation itself also takes energy.
Post-stroke fatigue can certainly improve over time, but for some people it lasts months or years. The important thing is to recognize that needing rest does not mean that you’re lazy or failing at recovery. Your capacity might be different now, and that’s okay.
Why do I feel so emotional/anxious/not like myself?
I wish I had a clear answer to this, but the best I can do is tell you that I relate. Nearly every young stroke survivor I’ve talked to has struggled with the emotional aspects of having a stroke. First of all, I want to acknowledge that there are many reasons you may feel affected emotionally.
For one, you just went through something traumatic. Many stroke survivors struggle with fear that it will happen again, uncertainty about recovery, changes to your relationships or routine, and grief for the life they had before. Anxiety, depression, and PTSD can all occur after a stroke.
I also want to note that it may not be purely psychological. A stroke is a brain injury, and depending on which areas of your brain were affected, it can directly influence your emotions and behavior. In my case, I became much more sensitive to sensory stimuli after my stroke and initially felt extremely overwhelmed in busy public places, something my physical therapist said was exacerbated by the damage to my cerebellum.
There are so many factors at play after a stroke. Stroke fatigue can make it harder to regulate your emotions. Certain medications can play a role too — my anticoagulants made my periods much heavier and I developed iron deficiency, negatively affecting my mood. Losing your independence can change how you see yourself. Being suddenly confronted with your own mortality at a young age can be a scary experience.
Mental health is an important part of recovery. If you’re experiencing anxiety, depression, trauma symptoms, or other emotional changes after your stroke, it’s worth bringing up to your medical team and considering working with a therapist or psychiatrist to help you navigate the emotional side of recovery.
Is my weird symptom a sign that I’m having another stroke?
I’ve lost count of the amount of times I’ve googled some form of this question since my stroke. I won’t try to answer it directly, because there is such a difficult balance between acknowledging the real risk that exists after you’ve had a stroke and acknowledging that many stroke survivors also experience health anxiety after going through something traumatic.
Your healthcare team should talk you through which residual symptoms you might expect and which symptoms you need to look out for based on your individual situation (e.g., potential warning signs related to your stroke, medications, or underlying condition).
I would familiarize yourself with the BE FAST warning signs: sudden problems with Balance, Eyes (vision), Face, Arm Weakness, or Speech. I’d also take any sudden neurological symptoms seriously. If you think you might be having another stroke, always seek emergency medical attention rather than trying to figure it out yourself.
The risk is real, and I personally prefer to err on the side of caution. I also won’t lie — I’ve had a few ER or hospital visits for symptoms that turned out to be benign.
Over time, you’ll probably become much more familiar with your own post-stroke baseline and learn to understand which residual symptoms are normal for you and which ones feel different or new.
If you find yourself frequently spiralling about the possibility of another stroke, I want to emphasize that this fear makes sense. At the same time, if this fear starts interfering with your ability to live your life, it’s worth working through it with a therapist. Working with a therapist has helped me recognize when I’m getting caught in an anxiety spiral and become more comfortable without uncertainty, without ignoring symptoms that genuinely require medical attention.
What should I ask my neurologist?
Most importantly, you should ask them anything that you are wondering. They are there to help you.
I also know that one of the most overwhelming things about having a stroke is having to navigate all of this new medical vocabulary while your brain is recovering. Here are some questions I found helpful:
- The basics, which you (hopefully) shouldn’t even have to ask:
- What type of stroke did I have?
- What parts of my brain were affected? What do those parts of the brain control?
- What do you think caused my stroke? Is there anything about my cause that is still unknown?
- Are there any additional tests you recommend?
- Risk and prevention
- Do I have any individual risk factors I need to be aware of?
- What are we going to do to reduce my risk of having another stroke?
- What symptoms are an expected part of my recovery based on my stroke?
- What symptoms should make me seek emergency care?
- Medications
- Why am I taking each of my medications, and how long do we expect I will be on them?
- What medication side effects should I look out for?
- Are there any medications or supplements I should avoid?
- What can I safely take for pain relief?
- Moving forward
- Which specialists should I be seeing (physical therapists, occupational therapists, speech therapist, or other medical specialists)?
- Will I need repeat imaging? If so, when?
- Are there any restrictions I need to follow? For example, related to exercise, travel, driving, or work
- When should I follow up with you?
If you’re not sure what to ask, you can always ask “is there anything I haven’t asked you that you think I should know?” The value in asking your doctor, and not Google, these questions is that they know the specifics of your kind of stroke.
Okay, but how am I supposed to live my life now?
When can I go back to work or school? What will the transition be like?
Oof, this is a tough one. Some people return to work quickly, some take a while to return, and some never return. For many, returning to work is a gradual process. No matter the type or severity of your stroke, going back to work or school can be an adjustment.
One thing that’s important to keep in mind is that being able to do something is not necessarily the same thing as having the capacity to do it every day. You might be able to concentrate for an hour, but if it leaves you exhausted afterward, that doesn’t necessarily mean you’re ready for full-time work.
I would always talk to your medical team before returning. If possible, it’s also helpful to start small. Going from nothing to full-time work can be overwhelming. A lot of stroke survivors opt for a gradual transition, such as starting with fewer hours and increasing over time.
Personally, I decided to step away from my job and go back to school. Instead of jumping into full-time school, I decided to start taking individual classes. This has helped me test out my limits before committing to a more demanding full-time schedule.
You may also need accommodations to return to work or school. That could look like extra breaks, flexible hours or deadlines, working from home, a reduced workload, or a quieter environment. If returning to your previous workplace, it can be important to establish reasonable expectations and boundaries with your team. You may not have the same capacity that you did pre-stroke, and this can be difficult for other people to understand.
Returning to work can come with mixed emotions. Some may be excited to return to work, while others dread it. You might even feel both at the same time. All of these reactions are normal.
Can I exercise again?
While I’m not a doctor, for most people, the answer to this is yes! Exercise can be an important of stroke recovery. The real question is what type of exercise is appropriate for you.
You may even need to redefine exercise for yourself. I’m a year and a half out from my stroke, and my exercise almost exclusively consists of physical therapy exercises. What counts as exercise during recovery might look very different from what exercise looked like for you before your stroke, and that’s okay.
It’s worth talking to your doctor about whether you have any restrictions on the type or intensity of exercise you can do. A physical therapist can also help you develop a realistic exercise plan based on your current abilities and goals.
And a reminder: stroke rehab counts as exercise! Walking counts as exercise. Your balance exercises count. Anything where you’re exerting physical energy counts.
Can I drink alcohol?
This depends, so ask your doctor! Whether it’s safe for you to drink after a stroke can depend on the cause of your stroke, your medications, and your individual risk factors.
Personally, I didn’t drink alcohol for the first six months after my stroke, but I now have no restrictions. That doesn’t mean six months is the rule, it’s just what happened in my case based on conversations with my doctor.
Can I travel/fly?
I know you’re probably sick of this answer, but ask your doctor! When it’s safe to travel or fly after a stroke depends on your individual situation.
Personally, I was cleared to fly just a few months after my stroke, and I’ve been able to travel quite a bit since then. So if travel is something that’s important to you, having a stroke doesn’t necessarily mean giving it up. But it’s important to ask your medical team about any precautions or restrictions that apply to you. For me, I made sure to have a parent travel with me the first time to make the process less overwhelming.
Can I drive?
Maybe, but don’t get behind the wheel until you’ve been medically cleared to do so. Certain countries or regions have laws that restrict you from driving for a period of time after having a stroke.
The rules depend on where you live, so make sure you understand the requirements in your area and work with your doctor to determine when you can safely drive again.
What about sex?
This is something a lot of young stroke survivors wonder about but might be scared to ask! Having a stroke does not mean your sex life is over.
For most stroke survivors, having sex does not increase your risk of having a stroke. However, having sex might feel different after your stroke. Fatigue, changes in sensation, medications, and emotional changes may affect your desire for or experience of sex, and that’s normal.
Don’t be scared to bring this up with your medical team. It’s something that may take time and a lot of communication with your partner, but sex can absolutely still be part of life after stroke.
Nobody my age understands. What do I do?
This can be one of the loneliest parts of having a stroke young. It’s hard to watch your friends continue to live their lives while yours has suddenly changed direction. Having a stroke is an isolating experience, but you shouldn’t have to go through recovery alone.
Being open with your loved ones about your feelings and experiences can go a long way, but it’s important to remember that they don’t know what it’s like to experience this. Your friends might care about you deeply and still have absolutely no idea what you’re going through. But they also don’t necessarily need to understand exactly what you’ve been through in order to support you.
Personally, I’ve also found it extremely helpful to connect with young stroke survivors, whether it’s through a support group or social media. It can make stroke recovery a less lonely experience when you realize other people are going through the same thing.
Will I ever go back to how I was before?
I wish I could give you a definitive answer to this, but I can’t. The truth is, having a stroke is often a life-altering experience and may change the direction of your life, but that doesn’t mean you won’t recover the abilities that you’ve lost.
First, some reassurance. If you’re early in recovery, your symptoms may feel overwhelming right now, but they can improve or even disappear. You may also be able to return to work, school, relationships, hobbies, and parts of your life that currently feel impossible. Recovery is an ongoing process.
But I can’t promise you that your life will eventually be exactly what it was before your stroke. Having a stroke can change your body, energy, relationships, priorities, and the way you see yourself. For me, while I’ve essentially had a full physical recovery, my stroke has made me reflect and ultimately led to several major changes in my life. I don’t see this as a bad thing — I’ve simply had to adapt to my new normal and mourn the loss of my previous life.
You don’t need to figure everything out right away. You can take things one step at a time and slowly rebuild your life, whether that means returning to previous activities or opening up entirely new chapters.
