By K W Warburton, The Reluctant Spoonie
*Trigger Warning* Discussion of mental illness and medical trauma.
“This post is a bit different from my usual posts as it discusses a personal topic. Please be advised that it could be triggering if you have experienced medical trauma or negligence yourself . If you find that this story resonates with your own, please seek assistance from a trained counsellor or therapist. Healing from trauma takes time and I hope to prevent others from receiving the same treatment that I have from doctors by raising awareness of POTS through my blog and other advocacy work.” – Katherine
January is always the worst month of the year for me. I get the January blues and I get them hard. From the ages of 18-22, I had January exams to distract me during this time and they gave me something to focus on. For me, January has many anniversaries. When I was 17, my friend died suddenly which is something that I have never fully healed from. When I was 19, my Dad ended up in intensive care due to his cancer. I still took my exams because that is what he wanted me to do. When I was 22, I started experiencing POTS symptoms for the first time and blanked in an exam. That was my first experience of brain fog. All these anniversaries come up in January and each one is painful in its own way.
When I was on my career break, I spent the whole of January hibernating and not speaking to anyone which was easy due to the cold weather and snow. I have always felt fragile during this month and feel a huge sense of relief when 1st February arrived.
Last year, I barely notice the start of January. I spent my Christmas break writing an assignment on how acid rain affects tree growth. My POTS was finally under control and I was back at university where I’d dreamed of being every day that I was bedridden. I had just got a research placement confirmed for the summer and I had almost caught up with where I had left my life four years previously. I could feel those January anniversaries looming, but they did not feel as threatening as they usually did. My life was exactly where and how I wanted it to be. Yes, I still had a chronic illness, but it was no longer bothering me.
However, in early January, things took an unexpected turn.
2. The Breakdown
I went to the hospital for my infusion appointment, as I did every two weeks and was told that I had a new consultant that I would have to meet before I could continue my infusions. I was told that I would have to wait three months to see them. No alternative treatment was offered to me. I could not take my previous medication as I had suffered a life-threatening allergic reaction to it. I felt as if my whole world was imploding around me. Untreated, my POTS was so severe that I am unable to get out of bed, read or speak. I had been like that for almost three years prior to starting my infusions. These infusions were my lifeline and a stranger was pulling the plug on me. Three months was a long time to be left without medication. I would have to drop out of my degree again. I would have to give up my research placement. I would have to turn down the part-time job that I had just been offered. I felt as if history was repeating itself when I had worked so hard to get my life back.
My brain was unable to process what was happening.
All the strain of the past four years hit me at once. I felt something click inside my mind at that point as if someone had flicked a switch and I was now in full survival mode. I felt trapped in my own body and I was not in control of my actions or words.
“There’ll be no infusion today.” The nurse said.
I lost it. I screamed at her and ran out. After a while some other members of staff found me curled up crying on a seat.
I was clearly having a mental health crisis. All they did was shut me in a side room until a family member came to collect me.
I remained in this ‘high alert’ state for many days afterwards.
3. The Aftermath
Just over a week after this incident, I ended up in A&E for the first time in over a year due to severe chest pains. This is something that I had warned them about when they had abruptly cut me off from the only thing controlling my POTS. The doctor I saw was sympathetic and ordered blood tests, a chest x-ray and ECG. They checked to see if I was having a heart attack, something they always do with me due to my family history. Everything came back normal, apart from the ECG which had to be checked by a cardiologist. I was able to get an appointment with my own cardiologist a few days later.
The consultant I saw was my usual one and not someone new as I had previously been told.
He was confused as to why my infusion appointments had been cancelled and no one had informed him that they had been. A junior doctor had been instructed to write the prescriptions, but they had refused mine as they were an off-label treatment that she didn’t agree with. The junior doctor did not have a POTS speciality and did not have the authority to make changes to my treatment plan. I got my infusion appointments re-instated that day and I did not have to deal with that junior doctor again. However, it took a few weeks to get another appointment at the infusion centre as my previous block-booked appointments had been cancelled.
Unfortunately, the damage had already been done.
It took me three months to fully recover and return to my exercise programme and normal activity levels. My graded exercise programme has been vital to me regaining my fitness levels after being bedridden for so long. During this time, I was occupied with assignments, a group project and my part-time job. I did not have a huge amount of time to think about what had occurred in January. Every time I went for my infusion appointment, I held my breath, waiting for them to say that there was no prescription for me. Of course, now that my consultant had got involved, it was there waiting for me every time.
I found the most bizarre things to be triggering. I had to get rid of the whole outfit that I had been wearing on the day. I couldn’t wear the coat, scarf or shoes without being crippled with anxiety.
Over the Easter break, I had more time to think and found that I was feeling anxious for days leading up to any kind of appointment. Dentist, hairdresser, routine GP and even meetings with my personal tutor. This was not something that I had felt before to this extent. I felt so sick that I was not able to eat on the day of the appointment. My hands and arms would shake before and during the appointment.
I decided that it was time to get professional help.
4. Seeking Help
It took me several weeks to make the appointment to get an assessment with the mental health counsellor at my university (This waiting time was shorter than going through my GP). After the assessment, I was put on a six-week course of Cognitive Behavioural Therapy (CBT) as an initial starting point to help with my growing anxiety surrounding medical professionals and medical appointments. CBT involves retraining your brain to reduce negative and unhelpful thoughts and behavioural patterns. Personally, my main behaviour was avoidance (avoiding making medical appointments etc.) which in the long run was making me worse. I worked with my counsellor over this time period to identify other behaviours and thought patterns that were fuelling my anxiety cycle. I identified that I did not feel as if I was deserving of the medical care that I was currently receiving as so many doctors had refused me in the past. After I had completed my CBT sessions, I felt a lot lighter and I was equipped with the tools to combat my anxiety in my triggering situations.
Of course, I still have a long way to go with regards to treating my past trauma of developing POTS suddenly. In addition to the subsequent negligence and mistreatment from the various doctors who have been assigned to my care over the years.
5. What Have I Learned From This Experience?
There is often a mental strain when you develop a serious illness suddenly. Your life can be turned upside down and your doctors will (or should) be focused on fixing the physical problem that you have. Often, these mental strains are overlooked or considered less important. No doctor has ever asked me about my mental state throughout the course of my illness. Even when I was at a crisis point, I was not offered mental health care. Mental health should be considered as equal to physical health and I believe that everyone who is diagnosed with a long-term condition should receive regular mental health counselling to manage that. You should not be left until you are at breaking point to seek out help for yourself.
The question I always end up asking myself is Why? Why did this happen to me? On this occasion, the answer is simple: a lack of awareness of the severity of POTS, a doctor without the required qualifications being tasked with my care and a lack of empathy from the doctor in question who did not consider me as a real person when reviewing my medical file. To prevent those with POTS and other chronic illnesses being poorly treated by medical professionals in the future we must continue to raise awareness of these conditions within the medical community.
If you are experiencing mental health problems due to your chronic illness, speak to a medical professional that you trust, and they will be able to arrange the right support for you.
You can also get help through the following organisations:
National Suicide Prevention Lifeline https://suicidepreventionlifeline.org/
Find out why I don’t like fighting for the right to appropriate care in my article for The Mighty here.
Find out more about the relationship between chronic illness and mental health in this post by Brainless Blogger here