‘You have lesions in your eye.’ I ran out, crying hysterically. I thought I was going to die.’: Woman with Multiple Sclerosis advocates for invisible illnesses, ‘Be proud of who you are’

More Stories like:

“Where do I begin? I contracted glandular fever (AKA Mono) at the age of 16, and ever since then, things haven’t been the same. I was a dancer at the time, so I was very fit and healthy, but I found myself not being able to keep up with the class and taking a lot of sick days. Fast forward to 10 years later, I was going blind in my left eye! I had the weirdest headache for about a week, and then I realized my vision was off. I went to the doctor’s office, and she advised me to immediately go to the eye hospital.

My boyfriend (now-husband) and I drove straight to the hospital. I said to him, ‘Wait in the car. I will probably just get some eye drops and an eye patch. Plus, I don’t want to pay to park in central London!’ Typical me, being so blasé about everything. An hour later, I came back out, crying hysterically, thinking the absolute worst.

Courtesy of Yazzie Nicolaou

During that hour in the hospital, I couldn’t tell you how many people I was seen by, how many tests I did, and how many times they made me read this book of colored numbers I couldn’t see! Eventually, they told me I had Optic Neuritis. This is a condition that is diagnosed when there is damage in the optic nerve in your eye.

The doctors then said, ‘This condition is highly related to MS, so we need to send you for an MRI.’ I remember standing there thinking, ‘Did he actually just say that, or am I dreaming?’ One of the doctors then said, ‘We need to put you on a dose of steroids to help the pain and healing of your eye. Do you have any questions?’

I remember just standing there with no thoughts, staring at him in the eyes, my mind blank. I was in shock. I didn’t ask one question, not even one! I came out of the hospital and burst out crying. I ran to my boyfriend’s car. I told him I might have MS and I thought I was going to die. I called my mom straight away and just cried my eyes out.

Courtesy of Yazzie Nicolaou

For 3 days, I cried and cried. I felt numb. The thought of having a condition I hadn’t even heard of scared me! What if I end up in a wheelchair? I didn’t Google a thing! I made sure I didn’t because I knew I would get paranoid. Friends and family looked up my condition and said, ‘There is no way you have MS, you don’t have any of the symptoms.’ Little did they know, these words of ‘support’ really weren’t helping.

I got put on a course of steroids and goodness, they were the worst! They made me so depressed and unrecognizable, in both my personality and my looks! I hated them! The ‘moon-face’ people go on about, it’s true, it happens. It is not fun! I can’t even look at pictures of myself at that time because they make me so upset. But, they did the job I guess.

Courtesy of Yazzie Nicolaou

I then had my first ever MRI scan. Everyone kept asking me if I was nervous, as it can be quite claustrophobic. I wasn’t nervous at all, but the more people would ask me, the more paranoid I would get! The day of my MRI came and it wasn’t THAT bad. The worst part of it was laying there for an hour and a half and keeping completely still. Do you know how hard that is? The noises the scan made were so loud, I started to make a song in my head and do a little dance with my toes until I heard through the speaker, ‘Stop moving. Otherwise, we can’t do the scan!’ Well, that told me!

Later, I had to go back to the eye hospital to check how my eye was healing. I remember they had the results of my MRI and took ages looking at the results. At that point, I knew something had shown up on them. The answers they gave me that day were so oddly vague. They said, ‘You have lesions, but your possibility of developing MS is 75% in the next 5 years, and 50% in the next 10 years.’ They wrote this down on a scrap piece of paper for me and sent me on my way. I left feeling so deflated and confused. At this point, I asked my doctors to refer to me a neurologist for a more in-depth conclusion.

Courtesy of Yazzie Nicolaou

Not long after, I had an appointment with my neurologist and he said I had recovered well from my optic neuritis and my MRI scan was ‘unimpressive.’ I did a few tests at the hospital, like walking in a straight line and touching my nose. I remember thinking, ‘This can’t be a serious test, can it?’ The neurologist told me from the results, there wasn’t much to see, which made him come to the conclusion I didn’t have MS. The relief I had that day was indescribable. I think I even celebrated.

However, 6 months later, I went to a trampoline park with a friend, and BAM, the other eye went blurry. Well, this time I knew exactly what I was in for. I went for another MRI scan, saw the same neurologist, and I received my diagnosis 10 days before my 27th birthday.

The doctor said plainly, ‘You have multiple Sclerosis.’ I was with my sister at the time. She broke down in tears, and I remember sitting there saying, ‘Okay, now what?’ I didn’t feel shocked at all. I was actually expecting it. I think I was actually relieved I was diagnosed, in a way it felt like it was the answer to all the health problems I had had over the years.

Courtesy of Yazzie Nicolaou

Straight away, I was taken into the other room to discuss my medication options. I was handed a booklet with all the options and their side effects. I still have the booklet even now. I kept it for memories. I was also handed a folder with loads of info, it felt like a ‘welcome to MS: starter pack.’ After a long discussion with the nurse, I was sent on my way to have a think. Boy did I do a lot of thinking!

Courtesy of Yazzie Nicolaou

I vividly remember having a discussion with my boyfriend after. You can’t help but think, ‘Does he still want to be with me now? Am I going to be a burden? Does he still love me?’ All these questions went through my head and I couldn’t help it. We spoke about it and he was nothing but supportive. In fact, 5 months after my diagnosis, he proposed! He actually proposed when I was at one of my lowest points, but I didn’t realize that until I look back on pictures and remember the feelings I felt at the time.

Courtesy of Yazzie Nicolaou

I think out of everything, waiting to start treatment was the worst part. Knowing I had a life-changing condition, I was impatient. I wanted to start kicking its butt as soon as possible!

Luckily, as an assistant TV producer, I freelance mostly. I was able to take about 6 months off of work. At that time I just lived my best life. I was out a lot, I was eating a lot of junk food, and just sugar-coating my diagnosis. I had started my treatment at this point. I decided to go on a treatment called Tecfidera. It was a tablet that you have to take twice a day with food. Doesn’t sound too bad right? Wrong! Turns out I was allergic to them! The severe stomach cramps, the hot flashes, loss of sleep, dry mouth, and itching whenever I ate something. It was HORRID! The doctors put me on a lower dose, hoping it would improve. It’s safe to say it didn’t. We were back to square one.

Courtesy of Yazzie Nicolaou

Soon after, I went back for another MRI only to be told new lesions had formed. I needed to be put on a harsher treatment as soon as possible. I remember I got the call while I was back at work. I just broke down. I was thinking, ‘Why me? Why can’t this just be easy?’ Luckily, my work was very understanding. My boss’s mom has MS, so she understood exactly how I was feeling.

With my doctors, we decided I go on a treatment called Tysabri. It is a monthly infusion, where I have to go to the hospital for the afternoon and get put on a drip. I actually love it! I go into a room with three other people who all have MS and we get to share our experiences and stories! In a way, it’s like therapy. You have your family and friends to talk to, but there is nothing like speaking to someone who is in a similar position to you and has gone through the things you have experienced. You get to know the doctors and nurses that look after you. Before you know it, you are a regular and you all know each other!

Courtesy of Yazzie Nicolaou

It took my body a while to adjust to my infusions. I start to get sleepy as I’m getting my infusion, but I look forward to going home because I know I am about to have the best sleep of my life! I am also starving when I come out of the hospital. I allow myself to eat all my favorite treats and I always have to have some donuts ready for me when I get home. The day after I get a ‘Tysabri hangover.’ I have to make sure I have all my favorite snacks on standby because when I went up, the hunger pains are real!

Courtesy of Yazzie Nicolaou

For the next few days after my infusion, I am very drained and sloth-like. I sleep a lot and watch my favorite shows on TV. Although some days I do feel a lot better, I still listen to my body and allow myself to rest. I think sometimes I forget how harsh the treatment is on my body but I have to look after it. After all, I only get one body.

Since started my second medication for my MS, I have had no new lesions! Can you believe it?! I am coming up to my 2-year anniversary of starting this treatment and I am forever grateful for being on it. I have never felt better and I am feeling so content with my health and support system around me at the moment.

My advice for anyone going through anything similar to this, or newly diagnosed, is don’t panic! I promise it will all be okay! Another piece of advice is STOP GOOGLING YOUR SYMPTOMS! I cannot express this enough. I didn’t Google a thing, instead, I spoke to people who had also been diagnosed. We shared stories of our symptoms and tests we had been to. I even remember a test I went to for my eyes, I had gold wires put in my eyelids, and all these wires glued to my freshly-washed hair, I remember thinking at the time, ‘This is some weird alien stuff, but it’s so cool!’

Courtesy of Yazzie Nicolaou

I now run an Instagram page to speak more openly and honestly about what it is like to live with an invisible illness. I love speaking so frankly about good and bad days. I reference the comments I get like, ‘You look too young to be disabled,’ and how I have dealt with everything that has been thrown my way that has come along with the diagnosis. I get messages on a daily basis from people who are in similar positions to me, newly diagnosed, or just want to message me for some advice! I feel honored when people message me. If I help just one person by speaking up about my condition, then I feel like I have made a positive impact!

I think it is safe to say that since being diagnosed, it has given me a kick up the butt! I have started to look after myself a lot more and I have learned to let the little things go. I have started to feel myself relax a lot more and not feel guilty for canceling plans when I am just too exhausted to go to them. I have learned I have more good days than bad and to appreciate the little things, like being on such an amazing treatment, to beat this disease I have to live with.

Coming up on 4 years of my diagnosis, each year has become a little easier. I have learned how to accept I have had to adapt to my condition, while also remembering the condition doesn’t define me! I have learned MS and I have a love/hate relationship. We have our good and bad days, but at the end of the day, we are stuck with each other forever. It’s better to get along than to butt heads all day long! Just remember there is nothing wrong with having an invisible disability, or any disability, in fact. Be proud of who you are and how strong you can be. The rest will be easy.”

Courtesy of Yazzie Nicolaou

This story was submitted to Love What Matters by Yazzie Nicolaou from London, UK. Follow Yazzie on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about invisible illness here

‘My legs froze. I collapsed. ‘It could be worse.’ Embarrassed, I was carried away in front of an entire field of people.’: Fibromyalgia warrior raises awareness for invisible illness

‘I can pull her arm out of the socket. I can put my finger in.’ He examined me, muttering, ‘Oh wow.’: Student diagnosed with Hypermobility Syndrome, ‘I’m proud of my invisible illness’

Provide hope for someone struggling. SHARE this story on Facebook and Instagram to let them know a community of support is available.

 Share  Tweet