Trigger warning. This post contains a lot of medical information and upsetting details. These are all true events and represent my experience and beliefs only.
1995 was the year my health anxiety started. Following my last post I thought I would share a bit more of my personal journey. Sorry if this is a tough read – it’s been a tough ride.
I was in my final year of senior school. I had a boyfriend. I had some really great friends. I was studying hard and feeling hopeful for my future for the very first time.
I wanted to go to college and study English Literature, Drama and Psychology. Then head off to university to take these subjects further. Never truly believing that my face would ever be accepted on stage, I made a plan B. I would teach English and Drama to kids and help them make it on stage. With plan A and plan B in place I was ready to take on the world!!
As previously mentioned, just prior to 1995, I had made the difficult decision to stop all facial surgeries. The next and final operation, my silver bullet as it were, was not actually the case at all. Instead of giving me the much coveted symmetry and finally connecting all the dots that had been left in place by the operations that had come before, it was actually more of a hit and hope than a home run.
To recap. I was born with facial paralysis. The nerve damage was caused during my birth, which they believe was caused by a rather enthusiastic assisted delivery using forceps. When I was 5, I had a massive operation on the damaged left side of my face to lift it and support it by using what is called a static sling. This sling was made from a tendon taken from my arm. Over the next couple of surgeries, the doctors would go back in via the same incision in the left side of my head and tighten this sling so it coped as I grew. When I was 12 years old, I had a cross-facial nerve graft. This is where a nerve was taken from my leg and placed inside my face, connecting the working right side to the left side ready for the final procedure.
In 1994 I was back with the doctors discussing this final procedure. The final operation and golden ticket to normal was a muscle transfer. A muscle would be taken from my pectoral region and placed in the left side of my face and connected to the new nerve. Once done…I was to wait…no guarantees.
However, the size and weight of the new muscle would pull the left side of my face back down (despite the sling trying to hold it up) and therefore would make my left eye look even worse. Also the symmetry that I spent my childhood praying for was a fantasy. They couldn’t make my face symmetrical. This muscle would only activate once I clenched my teeth; it would then pull up the left side into something that resembled a smile but as for talking and non smile related facial gestures, I would look the same, possibly worse due to the weight of the additional muscle. They also couldn’t say if this procedure would affect everything that I had been through before. It was a massive risk for a possible ok result..
I was broken. It was the first time I knew the truth. This wasn’t a challenge to overcome. I was stuck like this forever. To date over 25 years later, there are still no viable treatments for people like me.
Needless to say, I bowed out. In that consulting room as a young teen, dealing with huge life changing decisions, I made the choice. I was not putting myself through anymore. The doctors suggested that I could possibly consider some eye surgery to improve the aesthetic of my left eye. Maybe squint surgery. “Ok fine” but to be honest by this point, I just wanted to leave. I was 15 and carrying the weight that no child should bear.
Months later in 1995, I remember attending the hospital appointment to see an eye specialist. In comparison to what I had been through, squint surgery seemed like a hair cut so I did stroll in extremely confident. That was shattered in a matter of minutes as the doctor wheeled his chair back from looking at my eyes.
“I think you have Retinitis Pigmentosa”
I had never heard of it. Still relaxed, I just blurted out the first thing that came into my head. “Are you telling me I’m gonna go blind or something?”
“By the time you are 25, yes. I am going to refer you to a specialist”.
I don’t remember much from that day after that. My mum was on the phone outside the hospital. I remember telling my boyfriend. My mum spoke to my optician who wanted to see me as soon as possible as he didn’t believe for one moment I had RP. He advised my mum that he only saw about 3 cases of this disease per year and having looked at me, I didn’t have it
I couldn’t believe it. Why? Why was this happening? After everything I’ve been through, to get this far, why me?
The specialist was at Moorfields Eye Hospital in London. This time my Dad came with me. I remember what I was wearing. The 3 hours of tests. The 70s style floor I looked at for ages as I waited for my name to be called. This Professor looking chap looked at my eyes. I could barely breathe by this point. It was all too much and right there and then I had my first panic attack. He confirmed that although there was pigment in the back of my eyes, I didn’t have Retinitis Pigmentosa. I remember clearly him saying, “I’m not saying that if you have a stroke at the age of 70 you won’t go blind but what you have now will not cause blindness. Smile, go live your life”. I remember my tears of joy as I gazed out the window with a newfound appreciation for the colours of the world around me. This nightmare was over!
That said, it left permanent emotional scars. In between these two eye appointments, I changed all my college courses for more popular ones like Accounting and Economics as I just wanted to be with my friends. My confidence and hope for my future, despite having my eyesight intact, was gone. I just didn’t feel I could branch out alone and follow my path. So I followed the crowd.
In the first term of college my best friend’s Dad died of a brain aneurysm at 39. My Dad tried desperately to save him, giving CPR until the paramedics arrived but he was gone. The shock and pain of this event ripped through my friend’s family and ours. My Dad was never the same again and my mum ended up in therapy. 39. There was no warming. He was so young. He was gone.
Buried in courses that overwhelmed and disinterested me, I followed my best friend and dropped out of college and started working. Outwardly I continued as normal. Inwardly, I was sinking. Everything was swimming around in my brain. All the doctors. All the operations. All the scans. All the bad news. I was scared to fall asleep, scared of something else going wrong with my face. Scared of all things eye related. My best friends poor dad. Heart palpitations, headaches, any kind of tingle or odd sensation would send me straight to the doctors.
My mum used to get weekly magazines that would often have true life stories in them. I would read them all, like I needed to, like some kind of addict. I couldn’t stop. These stories featured real people and real families, dealing with blood clots, brain tumours, cancer and meningitis, then I saw a picture of a woman who looked just like me. I just had to read it. She had suffered an attack of Bell’s Palsy. It started with a sore throat, then a tingly tongue, then paralysis down one side of her face. I was mortified. At this point I had no idea this could happen. Could it happen to me? If it did, I would be completely paralysed!
Over several months I became totally distraught. Checking my face hourly. Checking old photos of myself for changes. Everyday I would eat throat lozenges completely petrified I would get a sore throat. I ate so many of them I would cut the inside of my mouth on them.
I was feeling pains in my face which I was convinced was nerve pain. My doctor at the time was so patient and kind. He would check me over whenever I called. Looking back I was in a horrific state. He would check my eyes (when I was convinced I was deteriorating again), check my legs (when I just knew I had a DVT). I used to be so scared of clots, I wouldn’t even wear a watch as I was convinced it was restricting my blood flow. I was living half a life. Bad things happened to me. They could happen again.
This went on for years but illnesses aren’t always in your head, as I was about to find out.
In my early 20s, I was very ill with abdominal pains, irregular periods, bad skin and weight gain. I was eventually diagnosed with Polycystic Ovarian Syndrome. I was told fertility could be an issue but at that time I was too preoccupied with getting myself well.
I suffered from very painful rosacea too. My face would burn daily and look so patchy and red. No makeup would cover it. I spent so much money on different treatments and moisturisers. I spent months at a time on antibiotics. Thankfully once I hit my 30s, it became much more manageable.
When I was 25 I started to get very sick again. Severe abdominal pain and bloating. Blood loss when going to the toilet. I lost so much weight. By the time I saw a specialist I was 26 and fearing the worst. I couldn’t even swallow food. I had spent nearly a year being told I had IBS and to take laxatives. I had allergy tests, ditched wheat and dairy but was still so ill. All the signs pointed at stomach cancer. I was almost too sick to care at this point. The specialist finally diagnosed me with Ulcerative Colitis, an inflammatory bowel condition. Although not curable, it could be managed with diet and medication. At my best, I take 3 tablets a day. At my worst I take 70 tablets a week plus nightly enemas. It has been a very challenging illness but I’ve learned to live with it.
Shortly after this, I started getting pain in my left eye. It was so painful and bloodshot. I went to my GP praying for conjunctivitis. It was not. He immediately put a call into my local eye unit at the hospital and told me to go there immediately. I just lost it. All the Retinitis Pigmentosa stuff came flooding back. I couldn’t have a hospital look at my eyes, not again. He had to give me Valium just to get me through the door. Once evaluated at the hospital, I was told I had a corneal ulcer. Classed as a medical emergency, I was given antibiotics drops and steroid drops and an appointment every 4 days so they could check it had healed. I went on to have several of these, almost monthly for a period. Some cleared easily, some didn’t. Thankfully I have been ulcer free since 2013.
I had to make some permanent changes to protect my left eye. I have to use artificial tears and sometimes eye ointment at night to keep the left eye (which is affected by my facial paralysis and doesn’t close properly) continuously lubricated. One other thing that crushed me was now I had to tape my eye closed at night to protect it. I felt even more ugly. Luckily my partners since this delightful addition to my nightly routine have not been bothered by it. I have always wanted to be able to close my eyes. Feel the rain on my eyelids when it rained. Nod off with a good book in front of the TV or have a snooze on a plane. That’s not a reality for me.
I did finally get that squint surgery to centralise the position of my left eye in 2009. I also went on to have two Botulinum toxin injections in my eye.
‘Botulinum toxin injections can be used to treat various types of squint and eye movement problems. Botulinum toxin type A is a chemical which stops a muscle from contracting when it is injected into a muscle. When the muscles contract the eye can be pulled away from the straight ahead direction so botulinum toxin can help to realign the eyes and relieve double vision.’
The results were great and gave me a more balanced eye position but the stress of having a needle in my eye and the entire ordeal and preparation, wasn’t worth the 3-4 month results so I stopped.
In 2013 I found my childhood surgeon. He was operating a small private practice and I was able to sit down with him. Hug him. Thank him and apologise for any stroppy teenage outbursts. He was lovely. He was exactly as I remembered him decades before. It was closure. He gave me contact details of surgeons that he would recommend as of that date, just in case I ever wanted or needed anything. I pursued that – just in case things had changed. I sat down with an eye specialist and a facial surgeon, who were both lovely.
After much consideration with their respective teams, I was called in for another appointment with them. I was nervous and rightly so. I walked in and there were photos of me all over the back wall and a sea of young doctors looking at me. My eyes rapidly scanned the room and I finally saw my doctor. He told me all the options that had been put on the table. Some minor, some major that would take months to recover from; then he said he was loathed to do anything as the results if any would be small. I cried. Telling him that I wished it was just us. He cleared the room, we were alone. He was so lovely and kind but his words I will never forget
“I think that hoping your journey with surgery had a finish line, was probably a little naive. We may have to intervene on a reactive basis when needed but realistically there is nothing I can do now. As much as I want to, I can’t fix you”.
My heart broke. It was never going to be over. I was never going to be free. I remember walking out of the hospital crying as my Dad held me for what seemed like an eternity. I felt like I was drowning. In that broken moment, I asked my Dad if he was still glad he had me. I was crushed, I had nothing left. We have never spoken about that moment again.
Weeks later, I opened up to a colleague at work as I set about trying to get myself together.
“I don’t know how you do it. I would have gone home and taken a bottle of pills by now if I was you”
I didn’t know what to do with that.
In 2016 I had my daughter in a pregnancy plagued by medical problems. Shortly after that my eyesight began to deteriorate and in March 2019 after many stressful months, I was diagnosed with Retinitis Pigmentosa again. I sobbed as I already knew what that meant. I have been here before. To be diagnosed once was hard. To be told it was a mistake and feel the life changing relief, only to be diagnosed again as a new mum; was impossibly cruel.
I had waited so long and fought so hard to have my beautiful baby girl, only to suffer the heart-breaking reality of not seeing her grow up. I had been through so much only for my future to turn black. Just like it had derailed my plans all those years ago, this disease took away my chance to have a second child. We were trying for another baby when we were told. To know my daughter’s face would fade before my eyes was devastating. I couldn’t go through it a second time. I also knew that as my independence slipped away, I wouldn’t be able to be the mother I wanted to be and who they would need me to be.
This time there was no optician telling me that this diagnosis was wrong. No knight in shining armour Professor, swooping in to save me. This was happening, just as I had feared all those years ago.
Just because you dread it, doesn’t mean you escape it. I had carried the fear of my eyesight deteriorating for years and now it’s a reality… again. This is not instead of everything I have to deal with but as well as.
I fell right back into the rabbit hole. Palpitations, dizziness and fear around the clock. Every tingle, pain and twitch became my focus. I spent 7 horrific months convinced I had MND because I had random and constant twitching. The only reason I feel calmer is because I’ve been twitching for a year and usually patients with MND deteriorate significantly in this time.
Covid brought everything full circle for me this year. I was dutifully receiving my vaccine and whilst waiting the obligatory 15 minutes before I could leave, I read the leaflet detailing the side effects.
Very common (may affect more than 1 in 10 people):
- Swelling/tenderness of the underarm glands on the same side as the injection site
- Headache
- Nausea
- Vomiting
- Muscle ache, joint aches, and stiffness
- Pain or swelling at the injection site
- Feeling very tired
- Chills
- Fever
Common (may affect up to 1 in 10 people):
- Rash
- Rash, redness, or hives at the injection site (some of which may occur some time after the injection)
Uncommon (may affect up to 1 in 100 people):
- Itchiness at the injection site
Usual suspects here so I continued to wait with zero stress and carried on reading.
Rare (may affect up to 1 in 1000 people):
- Temporary one sided facial drooping (Bell’s palsy)
- Swelling of the face (Swelling of the face may occur in patients who have had facial cosmetic injections.)
Oh my God. What have I done? Why tell people this AFTER the injection? I couldn’t breathe. I know now that Bell’s Palsy happens randomly. I had made my peace with that after many years of therapy but now I had been injected with something that could up my risk and possibly cause it to happen to me.
I am a mess. I am back in 1995. Trapped in my failing body. Desperately scared of what might happen to me. I’m worried about catching Covid but the only vaccines available all carry this risk. I reached out to my GP who dismissed my concerns. I was alone again. I spoke to a couple of nurses who were reluctant to speculate.
I want to do the right thing but the risk to me is the possibility of complete facial paralysis. Not being able to smile, eat or even talk I can’t risk that. Despite being told that vaccines aren’t mandatory and no one will force me to complete the vaccine treatment, I do run the risk of having freedoms taken away as a result of being unvaccinated. Plus being treated with contempt as some folk assume I’m a conspiracy theorist or anti vaxxer.
My anxiety is through the roof, I feel so tired, overwhelmed and alone and now you know why. I’ve had more than my fair share of issues with no end in sight. Most of my concerns have ended in a diagnosis. I had my worst fear become a reality, twice. I have been misdiagnosed before. I have both common and rare diseases and I have definitely reached the stage where;
“Statistically speaking…”
“The chances of you getting…”
“You’re due a break…”
Never seem to apply to me. So this is the reason I have had health anxiety for over 25 years. I have had a lifetime of operations, consultations, tests, scans and bad news.
I often wonder how I cope and then I look in the mirror and realise that most of the time, I don’t.
For the words I never got to hear but always hoped for.
Fix You – Coldplay