Portrait: Katie

I am Katie, a 37-year-old mum of two.  

Almost two and a half years ago, just a week after my 35th birthday, I suffered a series of 3 mini strokes caused by a neck injury which led to my blood vessel bending and stopping the blood flow to my brain.

A little bit about Katie 

The symptoms I had been experiencing before the first stroke were severe pain in my head, numbness down my left side, and sickness. I had a telephone appointment with the doctor on the Friday who thought I had a trapped nerve and prescribed some very strong pain killers. 

The day after I had the first stroke the symptoms worsened, with constant vomiting, blurred vision, and having no balance at all. I thought the symptoms were just a reaction to the strong pain killers. Fast forward five days, I collapsed at home due to poor balance and unable to speak. I was then rushed to the hospital where they carried out an urgent CT Scan. A second stroke had occurred.  

A challenging diagnosis 

In the middle of the night, as I was alone in my hospital bay, the doctors came and told me I had a brain tumour. Because of where it was, there was nothing they could do to help me.  

I WAS STUNNED and the first two things that came to my mind were, What about my kids? and, Is this it? I haven't even lived yet. 

I kept getting more ill by the moment, suffered another more severe stroke, and was then taken for an MRI where they disocvered that it was actually a series of strokes and not a brain tumour - what a relief. 

I spent just over a week in hospital mostly not being able to walk, balance, eat, etc. I kept thinking, why has this happened? And what is it here to teach me? 

What I’ve learned during recovery 

It has been a heck of a journey since. On a physical note, it took me a couple of months to fully get my balance back and nowI don’t feel I have any lasting physical challenges. However, on the mental side, it has been extremely challenging experiencing fear pretty much daily, severe health anxiety, frustration, sadness, happiness, gratitude, and panic attacks however, I have learned some really insightful lessons along the way. 

Sympathy is not welcome and at times I can find it a little patronising. I think this comes from a place of shame, I don’t want people to define me by this.

Life is for living. So cliché, I know, but you have to make decisions based on what you want, not what makes others happy. 

There is no need to tolerate anything or anyone in your life. Feed your soul with things and people that are good for youI have taken this literally and tightened my inner circle quite dramatically.

Anxiety is a REAL thing. You don’t always have the choice when it shows up. 

Working with a neuro-psychologist has allowed me the space to be vulnerable and perhaps shield those closest to me from what I have really experienced. I was fortunate enough to be fast-tracked on the NHS for therapy. I worked with them for 6 months and have recently been referred back to therapy, as I was really struggling. 

Where I am today with my recovery 

I would like my story to inspire anyone else that has gone through something that is not so visible on the outside but can be extremely debilitating on the inside. We all want to be perceived as if we are in control of our lives, but being vulnerable and sharing experiences is so important. 

The 3 most bothersome symptoms I continue to experience are feeling isolated, feeling misunderstood, extreme fatigue and the inability to control my emotions/reactions as much as I would like. 

Where I have found support  

I have found support through health specialists, the neuro-psychologist, and my husband, who owns a gym. His support in my physical recovery has given me confidence.  

I love going to the gym, I love connecting with people, I love creating meaningful gifts, I love walking, and spending time outdoors. Physically, I am glad to have been able to return to all the things I enjoy. 

I have been lucky to be supported by my family and some close friends. However, I find it very difficult to open up to them as it feels like a weight they do not have to carry. I also joined a couple of young person’s online support groups but did not continue because I almost felt like a fraud since there were no obvious physical signs for me. I am missing peer support from those who really get it though.

Words of encouragement for others 

Don’t take every individual at face value. Really help them be heard and be vulnerable.  

Book recommendation 

The Body Keeps the Score by Bessel van der Kolk 

In her story, Katie speaks of the importance of talking with people with lived experience. Did you know that SameYou has developed a peer support program that matches a brain injury survivor or their loved ones with people with lived experience? SameChat is led by a partner organisation, Sphere Rehabilitation. Find out more about SameChat. 

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