1) Introduce yourself – Who are you, where are you from and a bit about yourself.
Hi, my name is Leah, I am 18 and I live in the Northeast of England with my mam, dad, brother, sister, cat and dog. I love going out with my family as and when I can. I am a complete movie buff, especially anything Marvel, or zombie related, and I love to bake! I completely adore all animals, but my favourite animal is a Giraffe. This started with a Giraffe teddy I was bought before my first operation that I kept with me throughout all my appointments that I still have today. When I was 13 I went to hospital for an M.R.I as they suspected I had arthritis. Instead they told me I had a Spinal Ependymoma, in other words, cancer. They were the last words I ever wanted to hear, or ever expected to hear, at such a young age. It felt like a nightmare, my whole world came crashing down. I don’t think anything in this world could prepare you to hear those words, especially when I was expecting to hear “you have arthritis.” Since then on, my life has never been the same.
2) What illness/condition/disability do you have? When did your symptoms start? And what were they?
I live with chronic nerve pain due to nerve damage I suffered from spinal cancer. My condition forces me to use a wheelchair everywhere I go and a stair lift in my house. My symptoms first started during my radiotherapy because it inflamed my already damaged nerves. Then pain has also consequently led to a whole other list of problems like permanent muscle and nerve shortening. The biggest symptom, however, is pain that never goes away and unfortunately there isn’t really anything that helps relieve it. The best way to describe nerve pain is that it’s very sharp and electric, like lightning bolts going up and down your legs. Other symptoms include fatigue as I have a really hard time sleeping so I am constantly exhausted. My whole nervous system is in over-drive, so I feel sensations as if something is crawling or dropping on my skin and I hear sounds that aren’t there. And because I don’t use my muscles enough due to the fact, I can only walk a few meters, and can’t do any basic physical activity, they are very tight and they spasm a lot causing even more pain. This makes even the smallest tasks like getting dressed, putting socks on or getting in and out of the bath near impossible.
3) What was it like getting a diagnosis? Were doctors good/bad? Were you taken seriously? Did it take a long time?
Getting the diagnosis was rough, I was already going through a lot with my radiotherapy to then be told I was suffering from nerve pain was just mind blowing. We knew there was a chance of nerve damage so we knew quickly that it was that causing the pain, however we all thought it would eventually stop or at least reduce after treatment ended. Not even the doctors thought this would be permanent which made it even more difficult as I genuinely thought after a few months my life would go back to normal and I could return to school, but that didn’t happen. Because of this I often felt like doctors thought I was lying or exaggerating as they didn’t fully and still don’t understand why the pain is still so intense. Five year later and I’m still suffering from chronic pain and I have been told I’m more than likely going to be stuck like this for the rest of my life which was definitely the hardest pill to swallow. I still haven’t fully accepted that fact, you don’t want to believe the pain is here to stay because of how hard it is to live with.
4) Had you heard of your illness/condition/disability before you were diagnosed?
I knew there was a risk of nerve damage and pain, but I didn’t fully understand chronic pain and the idea that someone could live suffering from severe, unrelenting pain. I also couldn’t comprehend that someone my age could be hit with cancer or a chronic illness, it made no sense to me. Even today I still struggle to wrap my head around it.
5) How did you feel when you were told your diagnosis?
Devastated, I can’t even tell you the mental torment of knowing this excruciating, debilitating pain that constantly makes me want to pass out is here to stay. Before being diagnosed I was very athletic and active, I played netball for the school, I was a runner and just generally loved being out with friends. To have all that ripped away from you at such a young age with no real explanation was so hard, I just kept asking myself ‘why me’? All I wanted was to be a ‘normal’ and healthy teenager again but I’m not and may never be again. It’s almost impossible to envision a bright future when you have a chronic illness; there are so many what ifs. What if I can’t ever get a job, what if I don’t go out enough to meet a partner, how could I ever look after a child when I can’t even take care of myself?
6) What treatment did you have? Were there any problems? Did it help?
Wow, I honestly don’t even know where to start with this one! I have had physiotherapy, hypnotherapy, hydrotherapy, acupuncture, a tens machine, a spinal block and I also I went to a pain management centre in Bath for three weeks. None of these really helped, in some cases like the acupuncture it made my pain worse. I’ve also tried multiple strong medications like Morphine, Ketamine and Gabapentin, but again none of them managed my pain effectively. Its hard when doctors keep throwing treatments at you that usually help to treat people with your condition, but they never work for you.
7) Did family/friends/colleagues take it seriously? Did they support you?
I honestly have the best parents and siblings in the WORLD, they are nothing but supportive and have always taken me seriously. I remember in the very beginning I had been for multiple blood tests and x-rays which all came back clear, so we kept getting told I was fine, but the pain was getting worse. My parents persisted and eventually got me the M.R.I that potentially saved my life so I owe everything to them. My family have done everything in their power to understand what I go through and support me, and I would honestly be lost without them. They are my everything and my reason for getting up in the morning. On the days where I feel like I just can’t face the world, I get up and do it for them. My ‘friends’ on the other hand are a totally different story. I don’t think any of my friends understood my disability and pain because whenever they saw me, I wasn’t in the wheelchair and I had makeup on so I looked normal. They also hardly ever saw me cry because I purposely hid it from them, but they mistook that for me being fine. I don’t think they ever really took my chronic pain seriously and weren’t accommodating or sympathetic which is why the friendships had to end. I do miss them but when I do, I just remember the way they made me feel; sad, worthless, left out and unimportant. If you have friends like this in your life don’t be afraid to cut them off, you don’t need that negativity in your life.
8) How does your illness/condition/disability affect your life?
It affects every aspect of my life, I use a wheelchair out the house and need to use a stair lift to get upstairs which means I can’t go to certain friends and families houses if they don’t have a downstairs toilet. It affected my education, I didn’t go to school for five years, instead I was home tutored. The pain affects my social life as I can only go out for so long, but I also don’t go out enough to make friends and the wheelchair seriously affects my self-esteem. People either treat me like a freak and stare, or they completely ignore me. I’ve had strangers laugh at my face, call me a cripple and ask for a go of my wheelchair. Mostly it affects my independence, I can’t learn to drive right now, I can’t get a job, I can’t go anywhere on my own and I need help with simple tasks like getting in and out of the bath. These are all pretty simple tasks people my age are all doing so it’s hard seeing all my peers doing these things on social media knowing I cant. People don’t realise the immense affect a chronic illness has on you and your entire life and how isolating it can be.
9) What is something you wish people knew about it?
Looks can be deceiving, not every disability is completely visible, yes when I’m in my wheelchair you can tell I have a disability but when I’m not in it, I look like a normal teenage girl. I’ve had people check I have a disabled badge just because I walked five steps from the car to my wheelchair. I’ve also had older passengers assume I’m a lazy, spoilt teenager because I’m sat in the disabled seats at the front of a bus. People constantly assume that just because I’m a teenager, or I’m not paralysed, I can’t be disabled. Disabilities don’t discriminate, it can happen to anyone at any age. Just because my hair is done, and I have makeup on doesn’t mean I’m okay or healthy. What you didn’t see is the night before I was rolling around my bed screaming in agony. So, don’t make assumptions, you don’t know what goes on behind closed doors. Another thing would be don’t judge someone for dealing with a situation you’ve never been in! You do not have the right to tell me or anyone they should be happier, doing more or coping better when you haven’t lived a day in our shoes and seen what it’s like to live with a chronic illness. Finally, scars aren’t just physical, they’re mental and emotional and those are the scars that take the longest to fade. Not all the damage from these chronic illnesses can be seen, pain takes it’s toll so always be kind whether its to yourself or a family member or friend.
10) Anything else you’d like to share about it or your experience?
I don’t think people understand just how exhausting the pain itself is, and the toll it takes on someone. How difficult it is and how much energy it takes just to move your legs a few steps, with every step more painful than the last. How tiring small tasks like getting dressed or having a bath are never mind trying to go out. And because of this no matter how much sleep you get (which is my case isn’t much) you’re still exhausted and that’s okay!
Even though my daily life is a constant struggle and sometimes seems impossible because of my chronic pain I still try to be grateful for the things I do have. I have the best support system going and I am unbelievably grateful for my family. Most importantly I am thankful to be alive as on my journey I have met numerous amazing, strong people that unfortunately lost their lives. So, I try to live my life the best I can with a positive attitude and a sense of humour, trying to be hopeful for a better future.
