Long Covid - am I gaslighting myself?

hclark23
hclark23 Online Community Member Posts: 7 Connected
in Everyday life
Hello

I've been experiencing symptoms of possible Long Covid for the past 18 months and it has had a big impact on my life. I've had to take a significant period of time off work and have just handed my notice in after two failed phased returns.

The problem is I feel like a fraud using the label Long Covid when my symptoms are much less severe than other people's. My symptoms are fatigue, brain fog and unrefreshing sleep. I don't have any other symptoms like pain etc. But my fatigue is really just cognitive and emotional. My ability to engage in physical activity is only minimally affected. I don't feel that I'm ill the way other people are ill and so I just feel guilty about having time off work, etc.

In terms of mental health, I have been struggling with mood swings, anxiety, low mood and irritability. However, I have also more recently experienced a minor lapse in my anorexia symptoms (I have been in quasi-recovery for 10 years) and lost a few kilos which is probably also compounding my symptoms. This is NOT the cause of my fatigue though because I had been experiencing these symptoms for 12 months before the eating disorder lapse.

I suppose I'm just looking for some sort of validation that I'm not just making this whole thing up...

Comments

  • hclark23
    hclark23 Online Community Member Posts: 7 Connected
    Yes, my GP referred me to a Long Covid clinic about a year ago but I'm still waiting for an appointment. They also said they would refer me to my local eating disorder service but I have decided to look for support privately because I work for the same NHS Trust and don't want my colleagues to know.
  • chiarieds
    chiarieds Online Community Member Posts: 16,801 Championing
    edited July 2023
    Hi @hclark23 - & welcome to the community. As everyone will be affected differently with any diagnosis, then as your GP has referred you to a Long Covid clinic, I'd take that as your symptoms are being taken seriously. It goes without saying, & so should you. Scientists are learning about the effects of Long Covid all the time, & your symptoms do fit into some of those they've found.
    I appreciate why you're looking for help privately with your eating disorder, & it's good to read you're being pro-active about this. It's also likely impacting your health, so you're doing all the right things. & hope you get an appointment soon for the Long Covid clinic.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hello @hclark23

    Welcome to the community! :)

    I'm so sorry to hear you have been so unwell, but glad that you are seeking support for your eating disorder and are on track with the Long Covid clinic. I see members have come out in support. You are not alone, please don't feel like you have to compare your situation to someone else's. If you need support, you need support. I hope we can also be that for you here in the community <3

    We have a Coffee Lounge, where we play games, have debates and get to know each other. I hope you join in. It's also great to help keep your mind off things when stressed.  
  • hclark23
    hclark23 Online Community Member Posts: 7 Connected
    Thank you so much Hannah. You don't know how much I needed to hear this. I have been feeling very alone. I will definitely check out the Coffee Lounge.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    You won't be here, they can be a chatty bunch! :D 

    What kind of hobbies and interests do you have? 
  • hclark23
    hclark23 Online Community Member Posts: 7 Connected
    @Hannah_Scope I like creative things, reading, yoga, board games and learning foreign languages. How about you?
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @hclark23 You'd love a few of the threads we have going in Coffee Lounge at the moment :) 

    We sharing out craft things in our Kaleidoscope Gallery and we have A Book Nook too!

    I love to read :) I also like to hoard books as you may come to find! :D

    What languages have you learnt? 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Welcome to the community @hclark23! Sorry to hear you have been haven't been feeling very well -- but I'm glad you've found us.

    I enjoy boardgames too. :)
  • hclark23
    hclark23 Online Community Member Posts: 7 Connected
    @Hannah_Scope I studied French at uni and also some Japanese. Not practised in a while so pretty rusty!
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @hclark23 Very cool! We have a new thread on languages that you may enjoy reading. Quite a few members said they'd like to learn Japanese :) 
  • Emille
    Emille Online Community Member Posts: 22 Contributor
    Hi I am not sure how to link my comment to hclark 23 - but this is for you - I do wish you all the luck with the Long-Covid clinic.  You might want to consider talking to your G.P. also about other possibilities such as Fibromyalgia / Chronic Fatigue Syndrome or M.E. (Myalgic Encephamilitis).  These all fall under the umbrella of 'long-term post viral fatigue illnesses which have very similar symptoms. When 'Long Covid' started to be talked about - I had and still have hopes that they are actually all the same illness  and that by NHS /Scientists focusing on Long Covid a link, comprehensive treatments or even a cure may be found someday soon.

    Don't ever feel you are like a fake - sadly from what you say your symptoms are real and don't ever accept anyone telling you that you are faking or that is is all in your head. You deserve to be understood and have your symptoms looked at properly so that you can get the best treatment and outcome.  I have lived with Fibromyalgia / CFS for nearly 30 years and have ridden the ups and downs as well as finding many way to self manage - if you want to direct message me - I think you can on here please feel free and anyone who has these illnesses also.  I cannot give you a cure but I can share what I have learned and how to get through it as best as possible. 

    Be proactive and carry on doing the things you can do whilst making sure you pace yourself one day at a time to start with.  You can beat this and you will manage this over time I promise.... I send you my best heartfelt wishes. <3

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