I am 60 years old. I have lived with bipolar disorder since I was 21. It has been a difficult and bumpy ride. Looking back, it seems almost miraculous that I am still alive today. I have survived two near-fatal drug overdoses, which were serious suicide attempts, and several serious medical conditions.
It is my experience of my physical health conditions that I particularly want to tell you about here.
Through my 30s and 40s, I suffered with some medical conditions which were diagnosed at a very late stage after I had become very unwell. I cannot prove that my symptoms weren’t taken seriously by my GP because of my mental health diagnosis, but I strongly suspect it. I believe that I was on the receiving end of diagnostic overshadowing, which is the term used to describe a situation where symptoms of a physical illness are wrongly attributed to a person’s mental health condition or learning disability.
In 2014, I started to feel very tired, which worsened and carried on for 18 months. It was a terrible time. I woke every morning aching from head to toe. My muscles and joints ached. I felt as though I had flu. I had no energy. Everything I managed to do took enormous effort, even pleasant things like going for a walk or having a bath.
I had to give up work. I had been working as a volunteer mental health advocate, a job which I loved and found deeply rewarding. I had been working with some of the most alienated, vulnerable and misunderstood people in our society. This meant such a lot to me because there have been many times in my life when I have felt alienated and misunderstood.
I think the assumption was that my fatigue was linked to psychological issues. My Consultant Psychiatrist wrote in one clinic letter that I had ‘Fatigue in the context of an affective disorder’. This didn’t make a lot of sense to me as I had by then suffered from bipolar disorder for 33 years without ever having experienced true fatigue. My GP did all the tests available to her to try to find a physical cause of the fatigue, but all the tests came back as normal.
By chance, I was eventually diagnosed with a Stage 4 low-grade non-Hodgkin lymphoma, which was in my spleen and bone marrow. A lymphoma is a blood cancer that develops from lymphocytes, which are a type of white blood cell involved in the immune system.
This lymphoma was treated with six cycles of Rituximab (a drug used to treat some cancers and autoimmune conditions). Following this treatment, my energy levels returned to normal, which felt miraculous.
However, 18 months later, the fatigue had returned.
Again, I could do very little, staying in bed a lot of the time and feeling completely defeated. However, I wasn’t depressed. I know clinical depression very well from past experience, and this feeling of defeatedness was definitely different from depression.
I met with my Consultant Haematologist in July 2019 (a haematologist is a doctor who specialises in the diagnosis and treatment of diseases of the blood and bone marrow). She tried to persuade me that there was no active lymphoma anywhere in my body. I was very distressed and frustrated because I was sure that the lymphoma had come back. I was crying at times during this consultation. These were largely tears of frustration, as my scan results showed that my spleen was again enlarging, which the haematologist completely dismissed. She spent a long time explaining to me how measurements of the spleen taken from ultrasound scans were inaccurate.
My experience through my life has been that if I show any quite normal emotions such as distress or anger then people around me assume that I am psychologically unwell — that I am in some kind of bipolar episode. This in itself has been extremely frustrating for me because people generally stop listening to what I am saying.
The Consultant Haematologist, having dismissed my belief that the lymphoma had returned, recommended that I have a psychiatric evaluation. She told me that there was no way that the lymphoma would have caused my fatigue. Her final words to me were: “I’ll see you again in six months.”
I left the consultation room completely distraught. Two very kind nurses in the waiting room noticed and guided me into a side room and sat me down. They gave me a cup of tea and told me that I shouldn’t leave until I felt calmer. Eventually I was able to leave and managed to get myself home safely.
Following this consultation, I immediately went to see my excellent GP, who did believe that there was a lymphoma-fatigue connection. She instigated urgent investigations which revealed that I had a Stage 4 aggressive high-grade lymphoma.
The low-grade lymphoma had transformed into a high-grade one.
My intuition had been right.
A PET-CT scan showed that there was high-grade lymphoma in my spleen and in lymph nodes throughout my body. I was started on an intensive chemotherapy regime very quickly after diagnosis — six cycles over four months.
The chemotherapy was gruelling.
I suffered from a lot of nausea and I had to be admitted to hospital for several days with pneumonia when my immune system crashed. Fortunately, it is looking as though the high-grade lymphoma has been cured. Had the chemotherapy been delayed by six or maybe nine months, my outlook would likely have been bleak.
I am sure that the haematologist acted with the best of intentions in recommending that I have a psychiatric evaluation. I was frustrated and tearful. That is what she saw. Maybe she thought that I was depressed, and that is why she recommended that I see a psychiatrist.
Our brains process first what is most obvious. A very wise Consultant Psychiatrist once told me that ‘diagnosis’ means ‘seeing through’. The haematologist was not able to see through my external presentation to see what was really going on. She was so sure about her interpretation of my symptoms that she couldn’t see the solid fact that my spleen had incrementally enlarged over the previous three ultrasound scans.
The biggest mistake I made was to go alone to that consultation. I felt so vulnerable and utterly powerless meeting with the Consultant Haematologist and Clinical Nurse Specialist on my own. They both told me that I was wrong in thinking that the lymphoma had returned. I really ought to have had an advocate with me. That would have helped me to feel more centred, less misunderstood and less desperate.
I have a lot of experience of meeting with doctors. The best and most effective doctors, in my view, are those who treat me as an equal and work with me collaboratively.
They are experts in their field of medicine. I am expert in my experience of my personal health.
I have learnt to trust my intuition into my own health and ill-health of body and mind, even if it means that I disagree with a doctor. This personal knowledge and intuition has most probably helped to keep me alive.
I will always be grateful to my GP who really listened to me and believed me. I don’t think it can be easy for a GP to go against recommendations made by a medical consultant.
Once I had recovered from the chemotherapy, my energy levels again returned to normal. I have generally had a good year, although my activities have been somewhat constrained by all the restrictions. I was very fortunate to have an amazing holiday in Scotland last September. I am still alive!
Having experienced cancer-related fatigue for around three out of the past six years, I am very familiar with it. The most pronounced feature for me was that it felt very similar to a viral infection, without a fever. I feel sure that it must share a common pathway with chronic fatigue syndrome, a long-term illness most known for symptoms of extreme tiredness. The only thing that I found that helped was acupuncture. After each treatment, my energy levels picked up for 24 to 48 hours, which gave me a little relief, but it wasn’t long-lasting.
I am hopeful that research will move forwards quickly so that there may be some effective treatment for chronic fatigue available soon. It is truly terrible to be stuck in a long-term fatigue state. I am hoping that the current spotlight on ‘long covid’ might focus the best of minds on this condition.
What is it about having a mental health condition that blinds some doctors to what might really be going on physically?
Is it possibly the historic belief that ill-defined symptoms such as headaches, fatigue or abdominal pain are likely to have psychological origins once anything obvious has been ruled out?
Do some doctors hold the belief (most probably unconsciously) that patients with mental health conditions who return again and again to the surgery with the same physical symptoms are perhaps ‘attention-seeking’ or ‘help-seeking’?
Do some doctors struggle to see through an outward appearance of distress, desperation and frustration, as I presented to the haematologist?
I really don’t know. It is most probably a combination of factors.
I had naively believed that diagnostic overshadowing of people with mental health conditions was in the past. It has been known about for a long time. It was shocking for me to be told by a Consultant Haematologist that I needed a psychiatric evaluation when in truth my symptoms were due to aggressive high-grade lymphoma.
Diagnostic overshadowing is apparently alive and well. I suspect that people are still dying prematurely as a result of it.
NOTE FROM THE EDITORS: We would like to say a big thank you to Angela Merriott for sharing this very powerful account of her experience with her health and her personal encounter with diagnostic overshadowing. It was a pleasure to be able to share this on our platform.