Invisible Illness - My Story

As I’ve mentioned in a couple of my previous posts, May is Invisible Illness Awareness Month. An invisible illness is pretty self-explanatory and covers any illness that is not immediately obvious when looking at a person. More specifically, it covers conditions including M.E/CFS, Fibromyalgia, Connective Tissue Diseases, Epilepsy, Crohn’s, IBS and Chronic Pain. The list is massive, so the likelihood of you knowing someone with an invisible illness is huge. With this week being M.E Awareness Week, I thought I’d share my story with you, to try and raise awareness of how debilitating invisible illnesses can be.

My health has always been a bit wobbly, and even before I was born I was causing problems! My parents waited for nine years to have me – my Mum was very ill and the chances of her conceiving were pretty slim. But, along I came and despite complications throughout the pregnancy, I was born with no obvious problems. It was when the doctors were doing the usual newborn checks that they realised something wasn’t right – they found they could pull my legs right out of the hip joints. After having x-rays, I was fitted with a brace, which kept my hip joints in a locked position to allow the socket to develop further around the ball joint. I wore the brace constantly for about 8 months – according to my parents, bathing me was a nightmare because they weren’t allowed to remove the brace, so for the first 8 months of my life I could never have a proper bath. But, it seemed to do the trick and further x-rays showed that the joint was a lot more stable. I did have to be referred to a specialist when I started walking, because I didn’t seem to walk properly, but they decided it was nothing to worry about.

In this photo you can see the brace I had to wear - it kept my legs in that position

My childhood was generally pretty normal, although looking back now, I can identify elements of my illness, but at the time I just thought that everyone felt the way I was feeling. I experienced pain and clicking in my joints, and would often get times when I just felt exhausted and had to take a few days off school. I guess at the time we thought I’d just come down with a bit of a bug, and a few days off was enough to perk me back up again. I can also vividly remember some of my peers making fun of the way I walked. I had never taken much notice of it before (why would I?!) but once they had pointed it out to me, I could see that I was slightly different to them. Another problem I experienced on a regular basis were muscle sprains, strains and an occasional tear. I’ve lost track of the amount of times my parents had to take me to A&E with possible fractures in my arms and legs. One particularly bad injury happened while I was at school playing tennis in a P.E. lesson. I was barely exerting myself, but all of a sudden the pain in my foot shot through my body. After seeing various doctors, I was told I had torn part of a ligament in my foot, and it took weeks of careful physiotherapy before I could walk without pain.

Please excuse the awful fringe!

Despite these little setbacks though, I had a fairly typical childhood. I went to school as normal and took part in a whole range of extra-curricular activities, from ballet to Brownies. I wasn’t the type of child who could sit in front of the TV all day; I liked to keep busy. Something I will never forget is a party I organised in the Summer of 2003. I was 14 at the time, and about to start my GCSE’s at school. I felt happy – I had a lovely group of friends and was excited to be growing up and working towards my chosen career as a doctor.

I was 14 here - the summer before things went downhill

 I started back at school in the September, and within a few weeks I knew that something wasn’t quite right. I was getting awful tummy aches and nausea regularly, my legs started to feel like two lumps of lead and my parents commented that I was going to bed a lot earlier. I was just finding everything exhausting. I started to struggle with my dancing – I would lose my balance and feel faint, and my stamina just seemed to disappear. Before this, I had always done well with dance, passing exams with flying colours and taking part in displays and shows. My dance teacher would often tell me that I was ‘too turned out’ (in retrospect, I can now see that I am quite bendy, which could be explained by a new diagnosis we are looking into, but more of that later), but most of the time I did really well. As the school term progressed, my grades started to slip. I went from getting A* across the board to failing practice exam papers with U grades. Understandably I was getting quite frustrated – my head felt like it was stuffed with cotton wool and I just couldn’t get anything to make sense. I managed to last until the Christmas holidays, when everything went downhill rather quickly.

To be honest I can’t remember a lot of what happened next; perhaps I’ve blocked it out because it was such a scary time. At first, we just thought I had the flu or a virus, but when the symptoms continued and became worse, we started to get worried. Over the next few months I underwent numerous hospital tests – hundreds of blood tests, x-rays, ultrasounds, MRI scans, barium meals and was prodded and poked by so many different doctors I forgot who was who, but test after test came back showing nothing. It probably sounds odd to someone who hasn’t been ill, but it got to the stage where I was desperate for a test to come back showing something was wrong. At least then I would know what was making me feel so ill. I can honestly say I was terrified. At 15, you expect to be worrying about boys and school, but instead I was anxious about the fact that my body was breaking and no one could explain why.

Eventually, after exhausting standard testing, my Dad asked my paediatrician whether M.E could be a possibility. I still remember the words she said: ‘Well, if you believe in that sort of thing.’ That was it. No support on how I could manage my symptoms, or even an explanation of what M.E was. We were sent home with nothing. Over the next few months my weight plummeted. Eating was a nightmare because everything I ate caused me pain or made me sick. By this time though, my paediatrician had decided a psychiatrist should assess me. I just want to clarify here – M.E is NOT a psychiatric illness, but unfortunately there are some medical professionals that don’t believe it to be physical. I am almost certain that this is where my eating disorder was triggered. Surely it is understandable for someone to struggle to eat when everything they do eat makes them ill. But trying to get my consultant to believe me was a complete non-starter. By this point I needed to use a wheelchair to leave the house because I was so weak and the pain was so intense. However, this was also used against me, and I was told I was putting it on for attention and that young people like me shouldn’t be relying on a wheelchair. How anyone can truly believe a child would fake such extreme symptoms for such a long period of time is beyond me. I hated using a wheelchair and didn’t want everyone looking at me when I managed to get out!

Using a wheelchair to get out of the house

The next couple of years seemed to blend into each other. I continued to be in a lot of pain, had no energy, was regularly sick and had constant sore throats. I tried to go to the odd lesson at school when I could, but I was assigned a home tutor to try and get me through a few of my GCSE’s. One big problem that I have personally encountered is that, as soon as my consultant got a whiff of a mental illness, she refused to treat me for a physical illness any more. As far as she was concerned, my symptoms were in my head and I didn’t deserve to have my symptoms investigated further. I will happily admit that I do have mental health problems, and I don’t think it’s anything I should be ashamed of. But I also want people to know that it is more than possible to have physical health problems alongside mental illness. Sadly, this is a problem I am still having to this day. A particularly heartbreaking effect of my illness was the isolation. I had gone from having a large group of friends and socialising every day, to rarely seeing anyone. I found that incredibly difficult to cope with. I don’t blame my old friends – I know they had their own lives to lead and they didn’t want to be held back by someone who wasn’t progressing as they should, but it didn’t make it any less difficult. Don’t get me wrong, I have a couple of amazing friends who have stuck by me through everything, and I am thankful that my illness has allowed me to find out who my real friends were. Somehow, I managed to get to my prom at the end of Year 11.

Somehow I made it to my Year 11 Prom

When all my friends went on to college, I went into a psychiatric hospital. It was the right place for me at the time because I was having a lot of problems with my mood and eating, but I do wish that I had had someone to support me physically. During the 8 months I spent in hospital, my physical health did improve a lot. I don’t know how or why (I wish I did!) but I thought that maybe it was just the right time for me. I still got incredibly tired and experienced pain and stomach issues, but it was manageable. I completed college, went off to Uni, came back again because it wasn’t right for me and got a part-time job while I studied with the Open University. For a few years things actually seemed to be OK. And I was happy with OK. I could live a relatively normal life if I paced myself carefully and started to believe that the worst was behind me. Unfortunately, it wasn’t.

The beginning of 2012 came, and there had been a few little things that had started to concern me a bit. I was still weighing myself regularly, to ensure I didn’t let my weight slip again, and over Christmas I had noticed that I’d lost a bit. It wasn’t a huge amount, but it worried me. I hadn’t been trying to lose weight and as far as I was aware, I had been eating pretty normally. I mentioned it to my Mum, and over the next few weeks I was very conscious that I tried to eat even more than I had been. But it didn’t seem to help. Very gradually my weight was slipping and I didn’t know why. I’d been feeling quite run down but plodding along with life, when one day at work I felt absolutely awful. Apparently the colour drained from my face, I couldn’t stop shaking and the telltale tummy pains had started to return. I was sent home and didn’t go back.

I had developed what I thought was a simple stomach bug, so spent a few days at home resting, believing I would bounce back again. But the ‘stomach bug’ continued. Everything I ate was going straight through me and the pain in my abdomen was excruciating. After a series of negative blood tests I was referred to a Gastroenterologist, who ran a couple more tests. She also specified that I needed to be referred for an urgent colonoscopy. This was in March. I didn’t get my colonoscopy until June and it turned out my notes had been lost, which meant I wasn’t on the system. Looking back we should have chased it up more, but at the time we trusted that the hospital were doing the right thing. I had an OGD followed by a colonoscopy, which showed I had erosive gastritis in my stomach and inflammation in my colon. An initial diagnosis of Crohn’s/Colitis was made and, despite the fact I was bleeding, I was sent home. I ended up back in hospital within the hour and spent a week there, trying to recover from the procedure. I had barely managed to eat that week and, on the day I was sent home, I couldn’t even drink water without needing to go to the bathroom.

Over the next month my health deteriorated considerably. Every day my Dad rang the hospital to try and speak to my consultant. And every time he was told his message would be passed on/she was busy/she was away on holiday. When my outpatient appointment eventually came round at the beginning of August, my Dad had to literally carry me in. I could actually see the concern in the consultant’s face, and she did apologise, saying she didn’t realise how poorly I had become. I was admitted the following day and fitted with an NG feeding tube. I can honestly say it was one of the most awful experiences of my life. My biopsy results had come back negative, meaning I didn’t have Crohn’s/Colitis, but they had no idea what I did have. To try and help me absorb nutrition, I was given a pre-digested liquid, which meant my stomach didn’t have to work to break food down. It took a long time, but gradually I started tolerating the feed and my symptoms eased. Unfortunately, this had triggered my eating disorder again, and, like last time, they refused to look into my physical health any more. The tube was removed after six weeks and I was promptly sectioned. I spent the next couple of months desperately trying to eat. My food had to be pureed because my stomach couldn’t cope, but, very gradually, I managed to build up to tolerating normal food.

I've been reluctant to share this photo, as very few people saw me at my worst. However, it is
extremely difficult to portray images of an invisible illness, and I think this helps to show
how debilitating it can be

In November 2012, I came out of hospital and began treatment for my eating disorder. My physical health wasn’t brilliant, I was very tired and still getting strange stomach symptoms, but, like before, it was becoming more manageable. In 2013 I got back to doing a few hours at work and tried to focus on maintaining a healthy weight. But I was still experiencing some worrying symptoms. I developed a strange marking on my right hand side, which was eventually diagnosed as livedo reticularis – a problem with the small blood vessels getting damaged, but there was no definite cause. The pain in my legs was still bad and I noticed how much I was struggling to climb stairs. My symptoms were always blamed on my eating disorder though. Even though I was a healthy weight, I couldn’t escape my symptoms being lumped together.

That changed somewhat in February of this year, when my Mum had to rush me to A&E with severe stomach and back pain. After a CT scan I was told I had a mass on my right ovary and it needed removing immediately. They made it very clear that there was a strong chance of me losing my ovary. Despite this, I waited all day to be taken to theatre, before being told they had changed their mind. Another doctor decided that there wasn’t a mass after all, but that I have a deviated uterus. The pain continued and I began to be sick, which continued for a couple of days. They finally decided to do an exploratory laparoscopy, during which they removed my appendix.

For the next week or so, I did feel a lot better, and I tried to focus on building myself back up. But the pain started to come back, and we realised that something else was wrong. I was sent back and forth to the hospital more times than I can remember, and was continually told there was nothing wrong. It was only when a random ultrasound flagged up gallstones that the pain began to make sense. During this hospital visit I was also left holding my notes for a few minutes. I had a quick flick through and came across something that really surprised me. There was simply a date, back when I was still very little, and next to it were the words ‘Connective Tissue Disease.’ I questioned my Mum, who had no idea about it, so when I next saw my GP I mentioned it and she said she would do some digging.

In the mean time, my gallbladder was removed. I had hoped that would be the end to the pain and nausea, but unfortunately it wasn’t. The nausea has actually got worse and I am still in considerable pain. After looking through my old notes, but GP has decided I should go through some proper testing for a connective tissue disease because, apparently, my previous consultants were never happy with the M.E diagnosis.

That brings me to where I am today. I didn’t mean for this to be quite so long, but I hope that some people might find it interesting. I am currently waiting to see the Gastroenterologist again, and begin tests for a connective tissue disease. The hardest part of this illness, for me, is not knowing why I feel so ill and being told the symptoms are in my head. I feel that it’s quite arrogant to believe that, just because current medicine cannot identify a physical cause for a set of symptoms, that it therefore must be psychological. If you look back in time, people with epilepsy used to be treated by psychiatrists, as it was thought to be a sign of madness. Obviously, these days, it is a well known fact that epilepsy results from a fault in the brain, so what’s to say that, in another 10-20 years a cause won’t be found for the symptoms of M.E?

Last month, when I tried to get out for a bit

If you do one thing today after reading this, please let it be to do a bit of research about an invisible illness that touches your life personally. The best way to research it? Talk to the person who has it!

Do you have any experience of an invisible illness? I would love to hear your thoughts, experiences and questions

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