‘What’s that? It could be something sinister. You might have a tumor.’ I got fired for being ill.’: Young woman diagnosed with Ehlers Danlos Syndrome after countless tests, ‘I was getting sicker and sicker, but with no answers’

More Stories like:

“It was May 14, 2019, one of my best friend’s birthdays. I was feeling very unwell but went out to celebrate with friends. Little did I know, in less than 24 hours, I would be in hospital and my life would never be the same again.

For years I had suffered with what we assumed was a bad case of IBS, but it later turned out to be something much worse. I remember going to the hospital the morning after my friend’s birthday celebration and nothing could have prepared me for what was to come.

In the 6 months since May I have been admitted to hospital 6 times, had countless tests and procedures, had surgery, been rushed to hospital in an ambulance 4 times, nearly died, been paralyzed a few times, been told on several instances I could have cancer, fainted on around 40 occasions, and that is just scratching the surface.

I first got admitted to the hospital with suspected inflammatory bowel disease after being so nauseated I hadn’t been able to keep anything down for at least a week. I remember suddenly being thrown into a world of medical language I didn’t understand, and examinations I knew nothing about. Just as I thought I was getting used to the hospital scene, I was rushed in with a suspected stroke. I was only 19 years old. I was partially paralyzed (lost complete feeling and movement in my right leg), couldn’t breathe, was in and out of consciousness and also had a dodgy heart. Things were not looking good. I was very out of it, but can recall the emergency doctor uttering the words ‘stroke’ and I was in disbelief. Later in that specific hospital visit I was diagnosed with FND (Functional Neurological Disorder), which can inhibit similar attributes to a stroke, and I have thankfully regained use of my leg. Little did I know this wasn’t even as bad as it could get.

Courtesy of Naomi Stenning

I ended up getting fired from my job for being ill. As I was crying in front of a senior manager, he said to me, ‘I don’t care if you are dying or if you just have a cold, if you have 3 days off within 6 months of working here, you will be fired.’ I argued with him, felt hopeless, but ultimately, I got fired for being sick. I also had several family friends pass away and had to reject my place at my dream university. I was devastated when I had to give up my place at school. I had worked so hard, getting all A’s and, despite being unwell, I pushed myself to achieve. I got the grades to study music, my true passion, but was too unwell to go! I was gutted. It felt as though all of my hard work was for nothing.

But despite these far from ideal circumstances, the thing which has been most prevailing throughout these last 6 months has been God’s love. To say I couldn’t have got through these struggles without His guidance would be an understatement. You may be thinking, if God really loved me, why would He put me through all this suffering? It is a very fair question, however, God does not cause the suffering, but He is with you in the suffering. Knowing this helps me to get through.

My first hospital admission strengthened my faith in a way I am so grateful for. Sadly I have now gotten ‘used to’ hospitals, but the first time was new and scary. Everything was so overwhelming. I remember being taken into a room with several nurses for them to take my bloods and insert a cannula (a thin tube inserted into a vein or body cavity to administer medicine, drain off fluid, or insert a surgical instrument). I’ve had near 100 blood tests and cannulas since and don’t even notice them being inserted anymore, but on this first occasion, I was petrified. My dodgy veins and dehydration meant it was impossible to get the needle into me. To make a long story short, I ended up fainting, which didn’t exactly help my nervousness. My cannula still wasn’t in, but I was too scared to let the nurses try again.

Courtesy of Naomi Stenning

I recall lying on the bed in the cold, clinical room, surrounded by nurses and my mom, but feeling like the loneliest person alive. I was engulfed in a pit of fear. All I could think to do was pray. So that’s what I did. As soon as I uttered ‘Amen’ to myself, one of my favorite worship songs flooded the room. It was a Sunday afternoon and ‘Songs of Praise’ was on in the waiting room, and at this moment ‘Be Still’ by David Evans was being broadcasted. As I listened to the lyrics, I felt a sense of peace, and knew God was there with me.

I later had my first real procedure, a flexible-sigmoidoscopy (a procedure which allows doctors to look into your colon) and again I was terrified. As time progressed, I was getting sicker and sicker, but with no answers. Each test came back negative. I was being passed from doctor to doctor but with no results.

Finally someone scheduled an MRI. I was thankful for some kind of answer, however it quickly turned to dread as the possibility of a tum0r was discovered in my spine. The words, ‘you might have a tumor on your spine,’ will forever be engraved in my brain. My neurologist was looking at the MRI and said, ‘There are no obvious signs of a tumor…oh wait, what’s that? Well I’ll have to double check this with the radiologist, it could be something sinister.’ What??? It’s worth noting this was only days after I found out the biopsies from my colonoscopy, checking for bowel cancer, came back clear. I was finally told there wasn’t a tumor, but recently I have been told I need to have more scans because they are not completely sure.

Courtesy of Naomi Stenning

Everything was getting to be too much. I couldn’t emotionally or physically take anymore. I was sobbing in bed one night angry at God and yelling at him, ‘Why won’t you take the pain away?!’ I got to the point where I felt so unwell every single day I just wanted to die. I was angry and yelling at God, but my anger turned into helplessness and I began begging ‘please help me.’ Lying in bed, the words of Ephesians 1 came into my head about how God loves us and will never leave us alone. The peace I felt after is something I cannot explain, but my attitude truly changed from that one moment. I accepted everything hereafter as I knew God was in control. There was no way I could understand why at 18 years old I had spent more time in hospital than most people would in their lifetime, but it didn’t matter because I knew God would never give me more than I could cope with.

Since this moment things have actually gotten worse, if you can imagine. I have been spending more and more time in the hospital, and my plans have had to be adjusted a lot, but the main difference is, I am happy. I get asked all the time how I remain so positive, and the truth is, because I trust God. I know He always does what is best, even if I will never understand it. God is finally answering our prayers for a diagnosis, and I have now been told I have FND, EDS (Ehlers Danlos Syndrome), and am still under investigation for more. Additionally, I am now grateful for everything. I have been paralyzed and unable to even stand up, so now every time I can walk I am thankful. I have been unable to eat, and so now every time I taste food, I am appreciative. Before I wouldn’t have noticed the many wonderful things around me, but now I find them hard to miss. I appreciate the beautiful sight of a sunflower growing, the tuneful birdsong each morning and the warmth of my pink blanket a friend bought me. Yes, many things have gone wrong, but even more things have gone right.

Courtesy of Naomi Stenning

If someone told me a year ago to ‘just be grateful for what you have’ I would have laughed in their face. It is so much easier said than done, and often saying that to someone will just make them feel guilty and evoke more sadness. So it’s not what I am saying. What I am saying is to take a step back from your situation. Whether you are battling ill health, poor mental health, difficult relationships, financial problems or anything, take a step back. Remember everything is temporary. There is always more good than bad. If you woke up today, that’s amazing. If you are breathing, perfect. Can you read? You are blessed. Even if all you do today is read this article, I am proud of you and that is another good thing to add to the list. Remember, God is with you in your darkest days, and in the happiest ones too.”

Courtesy of Naomi Stenning

This story was submitted to Love What Matters by Naomi Stenning. Follow her on Instagram and YoutubeDo you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more inspiring stories about people living with chronic illness here:

‘After a yoga session, my spine slipped forward. I couldn’t move. I couldn’t roll over. I was a vegetable.’: Woman with Spondylolisthesis, chronic illness claims ‘pain is inevitable,’ but ‘suffering is optional’

‘I was told to ‘Man up.’ Did they honestly think I was just a drug seeker? ‘I can’t keep feeding you with medication,’ my doctors said. ‘The pain will eventually just go away.’ Was I going mad?’

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

 Share  Tweet

Queries: 115 Timer: 0.13034

Cache Hits: 2657 Cache Misses: 277