From not knowing how to articulate the symptoms to not being taken seriously, here’s why women are so frustrated by conversations with their GP about long Covid.
When we first went into lockdown in March last year, 36-year-old Hatty became really ill with coronavirus symptoms, including breathlessness, chest pain, swollen lymph nodes and night sweats. Because there wasn’t any official testing available at the start of the pandemic, she was never officially diagnosed with having Covid-19.
“After that, I went through a series of symptoms, from losing a lot of my hair, my periods stopping, brain fog and fatigue,” she tells Stylist. “I’ve been suffering from long Covid but, because I didn’t get that initial diagnosis, my GP hasn’t been very helpful. Before getting coronavirus, I was hugely fit – going to the gym four to five times a week, but I was only just able to start exercising properly again after 15 months.”
Eden*, 29, also caught Covid in March, and again in January this year: “I’ve been having intermittent conversations with my GP over the last seven or eight months, whenever I’ve felt particularly unwell and worried. I’ve not been ‘diagnosed’ with long Covid, but the most prominent side effects from having it twice have remained consistent: ringing in my ears and an unreliable sense of smell.
“Some of the other symptoms I’ve been experiencing – heart palpitations, chest pain, light-headedness, fevers and nausea – have been more temperamental during this time. The difficulty in articulating my concerns about having long Covid to my GP is definitely not helped by the potential that these symptoms are side effects of new medication or stress.”
It took Jess six months to find a doctor who believed she had long Covid symptoms: “The five doctors I spoke to before that told me I was experiencing anxiety,” she says.
And NHS worker Rachael, who is waiting to have her first face-to-face GP appointment about her long Covid symptoms, is worried about crying in the consultation: “But is it not a normal reaction to cry when long Covid has left you completely debilitated and you want answers and support?” she asks.
According to the NHS, many people who catch Covid-19 usually feel better in a few days or weeks, and most make a full recovery within 12 weeks. For some people, however, symptoms can last longer. This is called post-Covid-19 syndrome or long Covid. The Office for National Statistics has just announced that 6.2% of adults may have experienced long Covid since the start of the pandemic, which includes 3.6% who said they had and 2.6% who said they were unsure. People are advised to speak to their GP about any lingering symptoms to learn how to manage them and rule out any other conditions.
And yet, according to a number of women who Stylist spoke to, there is much hesitancy in reaching out to GPs about long Covid. Along with the knowledge that women’s medical issues are often not taken seriously by health professionals (it takes some women years to get an endometriosis diagnosis), there’s also the fact that long Covid wasn’t a known condition until last year after thousands of people started to self-diagnose. Then, there’s the issue that a lot of the symptoms mentioned are psychological as well as physical. In fact, ONS research shows that people who may have had long Covid are more likely to be depressed and anxious. Is this leading to a disconnect between GPs and patients in discussions around long Covid?
Charlie Palmer, MSK corporate clinical lead at Vita Health Group, says researchers and healthcare professionals are still working to understand the causes, treatment options, and potential recovery times of long Covid. But one recent study in China reviewed patients post-hospitalisation and found that most patients had at least one on-going symptom – particularly fatigue or muscle weakness, sleep difficulties, anxiety or depression – six months after the onset of symptoms.
“In some cases, due to the complexity of symptoms, the process of gaining a long Covid diagnosis may be frustrating and could affect mental wellbeing,” Palmer tells Stylist. “But individuals who feel unwell should definitely escalate their symptoms to their GP or healthcare professional, to seek appropriate medical help and potentially access the NHS Your Covid Recovery programme (an online resource developed for anyone to access).
For people who are struggling to articulate concerns about long Covid, she suggests: “Keep a diary of the symptoms you are experiencing and share this with your GP in your appointment. The symptoms of long Covid can fluctuate and if you see your GP on a low symptom day, this will help explain what you are experiencing, even if you are not feeling it at that moment.
“Describe the impact your symptoms are having on your everyday life. Does fatigue prevent you from walking to the shop? Do you find you have brain fog which prevents you from working? Also, have a think about any trade-offs you find yourself making. Are your symptoms causing you to pick between cooking dinner and having a shower, for example? Many of the symptoms of long Covid are invisible, and it can be difficult for people to recognise difficulty or discomfort in such cases.
“If you are concerned about potential bias in your appointment or feel anxious that you will not be taken seriously, don’t hesitate to explain this to your doctor. Know that your GP is there to support you and being upfront with your concerns will help you feel empowered. Your job is not to convince them to take you seriously.”
Beyond making sure your GP knows exactly what your symptoms are, there is also a growing conversation about how long Covid sufferers should approach the issue with their employer. According to a study by the Trades Union Congress, respondents described the poor treatment that they experienced at work because they had long Covid. Workers were faced with disbelief and suspicion, with around one fifth (19%) having their employer question the impact of their symptoms and one in eight (13%) facing questions from their employer about whether they had long Covid at all.
Palmer advises: “Have an open discussion with your employer, not only to ensure the appropriate support is provided at work, but also as some companies may have access to mental and physical health services, as well as Covid recovery programmes through occupational health or private healthcare schemes.”
Clearly, there is still so much to learn about this disease, which no doubt feeds into the anxiety and frustration of long Covid sufferers. Right now, the main thing is to make sure you’re heard and you receive the right treatment and management tools to get through it.
The NHS has a whole website section dedicated to information on long Covid, and anyone can access the NHS Your Covid Recovery programme.
And if you’re worried about working while suffering with long Covid, you can speak to someone at Citizens Advice.
Please always make an appointment with your GP about any symptoms mentioned above.
*Name changed at contributor’s request