Life with treatment-resistant depression, my story
By anonymous
With advancements in mental health support happening every day, we invite you to read about one persons unique experience navigating treatment-resistant depression and their courageous pursuit for a better life. Person X has shared their story to spread awareness of mental health and its many forms, including treatment-resistant depression, in hopes of inspiring others to seek support and be optimistic of what the future could hold.
Trigger Warning: Please be advised the following discusses sensitive topics including suicide.
I strongly believe I was born a depressive. Psychiatric illnesses run in my family and I believe genetic as well as biochemical/hormonal and brain anatomy predisposed me to depression. I have tried nearly every medication in the antidepressant section of the British National Formulary.
Born into a middle-class family at 32 weeks in 1971 20mins before my twin sister, we were separated from each other and our mother as we were put in separate incubators and mothers were not allowed in to see or touch their babies.
My sister was always cleverer than me and that made me feel inferior all of my life. I was subject to bullying at age 15years and my 1st episode of severe depression was at this age. I missed a year of school and was hospitalised in an affective disorders bed on the regional eating disorders service unit. I didn’t eat or drink as I wanted to die. I had my first ECT (electroconvulsive therapy) at the age of 15yrs.
In 1999, I was admitted voluntarily to an inpatient unit for a drug review but remained there until I had psychosurgery in 2001. I spent the next 6 months after surgery at The Retreat in York convalescing. I had had the “last resort” treatment, but it wasn’t working.
I tried drugs, CBT (cognitive behavioural therapy), ECT and TMS (transcranial magnetic stimulation). The ECT worked but left me with severe memory deficits. I cannot remember my graduation where I qualified with honours and was awarded student of the year. The yearbook says “this girl will go a long way”- I didn’t. I have been sectioned under the mental health act too many times to remember and been on an acute inpatient ward many times. I have tried to take my life on many occasions.
I was transferred from standard community care to the Regional Affective Disorders Service. I now felt understood. I felt my doctor knew how I was feeling without me opening my mouth. We established a good Doctor / Patient rapport.
I was a patient at the Regional Affective Disorders service when VNS (vagus nerve stimulation) was suggested as part of a 5-year research trial. I had no hesitation in saying yes, I had nothing to lose. It took ages to get the funding and I was suffering immensely but the funding came through and I had the VNS implant in February 2022. It was a straightforward operation, and I had no concerns, but I am affected quite dramatically by a voice change when the stimulator goes off. I was told it would take up to a year to have any benefit, which I have had to accept. It was hard for me when just before Christmas 2022, the Professor said he was sure the VNS was having some effect as I didn’t think it was and subsequently required overnight hospitalisation.
What can I say now about VNS? Towards the end of January 2023, I woke and literally felt a different person. It is hard to describe but I felt like a light had been switched on in my brain, I felt different but this time, different in a positive way.
I started back at my voluntary work in a lab after spending most of November and December just lying in bed hiding from the world and also started back running.
I was meant to be completing a virtual marathon in April to raise funds for Tyneside & Northumberland Mind. However, my mood dipped dramatically due to certain circumstances, and I attempted suicide again. I didn’t want to let my fundraisers down and so I completed the marathon jogging and walking in 06:35:35 raising £990 for TNM on May 20th instead of April 23rd.
I have goals set and am motivated to get up each morning. I still suffer with terrible insomnia, getting off to sleep is ok but I wake after 1-4 hrs. My nurse and I are just starting to work on this.
So how did I feel 3 weeks ago? I felt useful (in the lab), I felt wanted and needed in society and was pleased I am still alive. I do know VNS isn’t a magic cure and I will learn to manage my depression with hopefully fewer and less severe episodes, but my mood has dipped lately, and I am currently having a course of ECT again. I do have faith in the ECT and the VNS and am waiting patiently to start feeling better again.
Depression is a lifelong illness. I too suffer with severe anxiety and post-traumatic stress disorder. It is a way of life for me which I’m learning to manage. I shall be receiving CBT for difficult to treat depression, this is a research trial of 30 sessions in a year with a psychologist. This should be starting soon.
I have written my story to help others suffering with depression. My main message is try not to give up. There are new treatments arising and lots of research into drugs and neuromodulation treatments also provide a promising future treatments.
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