Content warning: This blog discusses suicide, self-harm, and food restricting/bingeing
Hi everyone! My name is Naomi (Nae or Nims depending on whom you talk to).
I was diagnosed with System Lupus Erythematosus (SLE) when I had just turned 10. This was diagnosed by Great Ormond Street Hospital (GOSH) in London, as my local hospital didn’t understand my symptoms. I then had to initially spend six months as an inpatient there as I was in acute renal failure.
One of the treatments started to cause my hair to fall out, but also eyelashes. I became very depressed, and every day I would say “I want to die”. My mum stayed with me for those six months while my dad was at home, looking after my three siblings. They would come and visit every weekend, but not being around my family put strain on my mental health too. Christmas was spent in the hospital and from then on, I don’t deal very well with Christmas as I find it triggering.
I was finally discharged in February, but didn’t return to fulltime school immediately. I had missed most of Year Six, the last year of primary school. I found that my friends had found other friends and I was really lonely. I used to walk around with the dinner ladies most days just so I had company. When I moved to secondary school, I didn’t attend the catchment school, so only knew 3 people in a year of almost 300 people. I was bullied terribly, especially because of my ‘moon face’ from being on high doses of steroids. The fact my hair was only just growing back made it worse.
When I was in Year Ten, my mental health spiralled and I then began self-harming. I ended up trying to end my life . Thankfully, my parents took me to the hospital and I was admitted overnight. After the event, I had compulsory therapy. However, during these sessions, I felt belittle and unbelieved. I was told I didn’t have depression or anxiety and was acting out to get attention. This put me off having therapy for many years.
My mental health was very poor during sixth form. This wasn’t helped by the fact I had to do 3 years–my fatigue was so bad I needed to split my second year into two years. I did 2 subjects one year, and one subject the next. I made new friends, however this meant they wanted to go out at the weekend, which I found hard due to anxiety and low energy.
I then went to Aberystwyth University at the age of 19 and due to joining the Christian Union and going to the Elim church, I made plenty of friends. I was still depressed, and even though I saw my friends every day, I started drinking alcohol to self-medicate. I also began to see how many days I could stay awake. This was due to having terrible nightmares. I was hearing my name being called repeatedly to the point where I was going out of my room and check if someone was there. I was paranoid most nights that there was someone under bed that would attack me. I also felt the sensation of spiders crawling on my body when I was trying to lie down. I also spent my money on new clothes rather than food to try make myself feel better. I was convinced that at size 10, I was incredibly overweight and restricted how much I ate, until I would have large binges on junk food.
I had transitioned from GOSH to Guys and St Thomas’s Trust and in April 2014, I had my first appointment with new consultant, who diagnosed me with neuropsychiatric (NP) lupus. This means that my experiences of nightmares from the age of two years old, my paranoia, hallucinations, delusions and to an extent, my depression and anxiety were the direct result of SLE. I had never heard of NP lupus before and this news completely shocked me.
I was referred to the psychiatric department and was very quickly diagnosed with depressive disorder, as well as small problems with my memory. I find it very difficult, even more so now, to remember things that are simple or difficult, like the number of a key safe, or even days out.
Eventually, my mental health became so bad that at Christmas of my second year at university, I withdrew and went home to my parents’ house. I spent many weeks in my bed, refusing to get up and engage with life. I spent my time sleeping (initially not helped my new antidepressants which gave me hypersomnia) and watching TV, trying to escape from the symptoms I was still having daily from the NP lupus. I also was diagnosed with fibromyalgia, because of the pain I was experiencing.
After a few months, my mum suggested I do some volunteering at the charity shop to get me engaging in real life. I had so much anxiety that my mum came with me to enquire. This quickly became my favourite place and I still volunteering there! I also joined a new church, which is important to me but had been ignoring. Again, my mum came with me to check out a couple and I eventually chose my local community church. Both of these things boosted my self-esteem and my mental health improved incredibly. I started making friends at both places got involved with kids ministry at church, starting going to Bible study during the week, and was volunteering twice a week at the charity shop.
However, my NP lupus was getting worse and my steroid dosage went up. I also started having cyclophosphamide infusions, which were every two weeks at Guys Hospital in 2019. They finished after 6 infusions in December. Almost immediately after, I was sick, which we put down to having caught a bug because of my low immunity. Soon, due to the COVID 19 pandemic, I was advised to self-isolate, even from my parents and sister who was living at home during lockdown. This began a serious impact in my mood. The sickness that was presenting for days at a time was eventually diagnosed with Cyclical Vomiting Syndrome, which there is no cure or really much treatment for. There is no known cause and there is no cure, just management. My new psychiatrist diagnosed my mood problems as Emotionally Unstable Personality Disorder. This was heartbreaking, but also lead to more support.
I’m now on medication, which seems to be helping with both psychical and mental health. I have a loving fiancé, am planning my wedding, as well as still involved at the charity shop, and very involved in my church social media, music team and kids ministry still. It’s been a rough ride, but I’m certain I am receiving the best care possible. My GP is understanding of my conditions, which is a rare gem. I’m much happier within myself and after many years of therapy, I am actually look forward to the future!
If you need mental health support – you are not alone. Your mental health matters just as much as your physical health and we encourage you to reach out. Here are some places you can find support:
If it is an emergency or you are in immediate danger, call 999 or go to A&E. Your mental health is just as important as your physical health and you are not wasting anyone’s time.
If it’s urgent but not an emergency, there are some NHS and charity services you can call:
Call 111 or go to 111 online
Find your local NHS England urgent mental health helpline here.
Call a charity mental health helpline. You can find a list on the Mind website here.
If you need to talk right now, these helplines are free and open at all times:
Samaritans: 116 123 (UK-wide)
A.L.L.: 0800 132 737 (Wales-only)
If you would prefer to text rather than talk, you can text SHOUT – 85258 (UK-wide)
If you want to talk to someone about eating disorders, you can contact BEAT via their helpline, webchat, or email.
I have followed the Samaritan’s guidelines about talking about suicide here
Just going to minimise having names in the article for safeguarding purposes.
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