Emma Samms, Long Covid SOS patron, writes about living with an Invisible Illness - Long Covid

Please don’t tell me I’m looking well. Of course, when I’ve prepared for you to see me, I am looking well.

As an actress, it’s my job. I know all the makeup tricks. I can even act like I’m well if I really try. 

So please don’t tell me I look well, or, even worse, tell me that you’re glad to see that I’m feeling better. I haven’t figured out how to respond to that. Do I just say “Thanks”, or do I tell you about the chest pain I’m experiencing but haven’t mentioned? Do I explain that the tinnitus in my ears means that I’m often lip-reading what you say? Do I point out that I didn’t smell or taste the meal we just ate? If I’m standing when we’re talking, do I tell you that I’m feeling dizzy and nauseous? Do I tell you that the consequence of this charade of health that I’m performing for you will have me struggling to get out of bed tomorrow? No. I won’t tell you that. I don’t want to be that person who sits next to you at dinner and explains all their symptoms, tells you about the results of the scans that have shown a heart scarred by myocarditis, or the ongoing microvascular disease in their lungs.

Perhaps you didn’t notice me ‘sofa-surfing’? Casually finding chairbacks and tables to lean on? Perhaps you didn’t notice me sitting down at every opportunity, or declining the chance to go upstairs to see a newly decorated bathroom or the fabulous view? Hopefully you didn’t notice. That’s not an image of myself that I relish. Certainly you won’t know that I have the constant sensation of not being able to get enough air into my lungs and that I’m actually permanently fighting the desire to lie down in order to feel a little less unwell.

I’ve been feeling this way for four years. Since I was infected by the original strain of Covid in March 2020. I’m now used to the sensations. As the years have gone by, they don’t feel any better, but they don’t panic me anymore.

If I’m in the company of friends or professional acquaintances, I’m not going to mention these things, because I’m afraid of sounding like I’m feeling sorry for myself, which I’m not. And I’m afraid of boring you. It certainly bores me; this omnipresent factor that has to be accommodated and worked around.

I used to be fit and healthy. I was known for having a high pain-threshold. I danced with a broken rib, for goodness sake! This new, hobbled lifestyle doesn’t suit me one bit. I resent that my brain is now preoccupied with calculations of what requires the most energy and how to avoid it. If I’m standing by the kettle, waiting for it to boil, would it be easier to sit down, rather than lean on the counter? Or would the effort of standing up from the chair, once the kettle has boiled, use more energy overall?

My wonderful husband, Simon, whilst doing so much on a practical level to keep our household running smoothly, also has the exceptional level of emotional intelligence to say the right thing; “I know you’re feeling rubbish, but you look beautiful”.  How lucky am I?

So perhaps if you see someone who you think seems to be feeling better, before you say anything, please realise that perhaps you are actually seeing someone who is really good at putting on makeup, and who is happy.

It’s not the same as feeling well, but I’ll take it.