Open Letters to Healthcare Professionals from people with ME/CFS – Part 2 Nicola and Jules

Against the background of a new NICE Clinical Guideline for ME/CFS (18 August 2021), which has the potential to improve healthcare provision for people with this condition, we have been focusing on health and social care and asking about your recent experiences, what it is you want from the NHS and social care services, and how you think current services should be improved.

During ME Awareness Week when such topics were discussed at some length, we asked if you’d like to write an anonymous open letter to the healthcare professionals you have met. We have had a good response to this request and will feature a selection of letters over the coming week.

If you’d like to take part and submit an open letter of your own, or have anything else you’d like to contribute on these subjects, then please email: Feedback@meassociation.org.uk

We will be using your feedback in a report on health and social care that will highlight good and bad experiences, your thoughts on service provision, and your suggestions for improving relations with primary and secondary care.

Dear healthcare professionals…

Nicola

I am a person with ME, I am afraid that I will lose my job. I am afraid I will lose my friends. I am afraid I will lose my independence and I am afraid I will lose myself.

Please do not attempt to palm me off with anti-depressants or tell me to ‘Have a child,’ so I might claim benefits. When I say I don’t think I can cope with this illness please do not tell me, ‘Tough. You have no choice.’

When I come to talk to you for advice please do not tell me to ‘Google it,’ and please do not hand me a leaflet, shake my hand, and tell me, ‘ME is a shit illness. Good luck!’ Please just listen to what I am saying. I know there is no magic pill. Please offer referrals when you can. Please help me to manage my symptoms and please, please don’t invalidate my pain.

Jules

I don’t come to see you anymore. Not because I am miraculously well but because I am too ill to cope. You don’t see me, even when I do come in, you just don’t see me.

I know my situation is hard to accept, believe me I do! But just knowing the negative response I will get is enough to send me spiralling. No. Psychological help will not ‘sort me out’, getting a job so I am not ‘in my head so much’ will probably kill me.

I am doing the bi-annual PIP form interrogation but I do not look to you for support, even though I have to list you as my primary medical physician. When I did ask for help you told me that I shouldn’t ‘rely on the State to fund my lifestyle’. I am still a human being inside a broken body. I still grieve the life I might have had and all that I am missing out on. It’s a sad state of affairs that I am so isolated, alone, and invisible because You Don’t See ME!

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