I’ve been feeling very down this past few weeks and dealing with a lot of ‘imposter syndrome’ feelings. ‘Imposter syndrome’ is a mental state in which you experience overwhelming feelings of self doubt and you question your own knowledge and experience. I think it’s a very common feeling with a chronic illness, especially one that is often viewed as an ‘invisible illness’. The feeling of being a fraud, doubting your symptoms, believing it’s all in your head. The majority of this comes from other people’s opinions and judgements of chronic and invisible illness. Sufferers like myself, of chronic or invisible illnesses receive so much criticism and doubt, harsh judgements from people who doubt our illnesses and believe us to be inventing illness or exaggerating. All of this judgement and lack of understanding leads to this ‘imposter syndrome’ where we begin to question our own experience and we end up feeling like frauds because that’s what so many other people think.

My recent experience with imposter syndrome was triggered by the need for a covid booster jab. I received my first two covid vaccines in group six, the vulnerable group. Group six of the JCVI priority list included people with neurological illness, which M.E is classified as. Despite this, thousands of M.E sufferers were refused because M.E was not on the list of example neurological illnesses and many health professionals don’t know M.E is even classed as neurological. I used a letter composed by the M.E Association to inform my GP of why I should be eligible for a priority covid vaccine and my GP instantly agreed and I was booked in that week. I was so surprised to receive that understanding and agreement, I’d convinced myself it would be a fight for acknowledgement, like so many things with chronic illness are. I’m still extremely grateful for that understanding, and I felt extremely lucky to have my covid vaccines despite my young age.

Now over six months has passed and the booster jab has become available for those who had their initial vaccines in the ‘at risk’ group. I’m eligible with a long term neurological illness once again, but I’m refused at every turn. The NHS booking system won’t allow me to book a booster jab because I’m only 27. Despite it clearly saying any adult can book who has a long term illness and is at risk of developing serious illness from contracting covid, I cannot book a booster appointment. The system just keeps repeating that I’m not eligible. I’ve rung 119 who had no interest in my eligibility, who repeatedly told me I’d have to go back to my GP and have them arrange it. I’ve spoken to my GP who says I am automatically eligible because I was included in the ‘at risk’ group for my first two vaccinations, but who has no ability to book me a booster appointment. The 119 NHS advisers send me to my GP, who sends me back to 119 and it’s this vicious circle that doesn’t end or have any conclusion. I’ve been going through this vicious circle for 2 weeks and the whole experience has left me ashamed, disappointed, and devalued as a person. It’s triggered an ‘imposter syndrome’ feeling because it feels like at every turn I’m denied, I’m ignored and I’m left feeling like a fraud. Because every time someone tells me M.E isn’t one of the listed illnesses, every time someone says they’ve never heard of M.E or it doesn’t make me eligible; I start to believe it. I am eligible, I have a right to get my covid booster but I’ve been refused so much that it’s left me feeling like I don’t deserve the booster, like I’m not eligible and I’m a fraud for trying.

It’s reminds me of my first experience and diagnosis process with M.E; of continually being told I was healthy and my symptoms were in my head, being unbelieved and ignored. It causes this feeling of shame and self doubt that is so destructive. I see thousands of other M.E sufferers experiencing the same fight and it just breaks my heart. We spend every day fighting fatigue and pain; we shouldn’t have to fight for acknowledgement and acceptance. We shouldn’t be refused and ignored because we don’t have an illness that is always physically visible; we shouldn’t be denied because of ignorance. Once again, M.E sufferers have to fight for something we are eligible for because our illness is misunderstood and not as well known. It’s extremely frustrating and I’ve felt like screaming numerous times in the past weeks. My GP has suggested I now go to a walk in clinic and I have an appointment booked for that in a couple of weeks but until then I won’t find any relief. I’ll constantly be worrying about getting there and being turned away because the system tells them I’m not eligible. I’ll worry and rehearse the argument and proof that I am eligible. I’ll have endless nights worrying that I will be refused, ignored and treated like a fraud. It’s ridiculous that in this day and age, M.E is still an illness which requires so much argument. It’s unacceptable that M.E sufferers are denied something because a computer system doesn’t recognise M.E as a valid illness. It’s unacceptable to be ignored and discarded because it’s too much effort to change the system. It’s unacceptable that we’re still so disbelieved and disvalued. I feel extremely let down by the NHS, by the government and society. Having M.E should not be a life sentence to fight for recognition, it shouldn’t be a constant struggle to access treatment and understanding. M.E and other chronic/invisible illness sufferers shouldn’t be made to feel like ‘imposters’ or frauds. We deserve the same understanding and attention as anyone else with a long term illness.