“You’re Looking Well…”
By Kerry Forrester
Yesterday was the first day I was able to leave the house in nearly 2 weeks: a combination of chronic, painful migraines, extreme fatigue and joint pains had kept me under a non-Boris dictated lockdown.
So, yesterday, I left the house and the first person I bumped into was my neighbour. She always politely asks after my health. Then I give her a summary of how I’ve been since I last saw her. She then always tells me how well I’m looking.
Every time, the same thing travels through my mind: does that “you’re looking well” really mean “I don’t believe you”? does it mean that “You must be exaggerating”? “I can’t see anything wrong with you”? Does it mean “My friend at Pilates has fibromyalgia, is twice your age and manages to do much more than you.”?
All this travels through my fogged brain at the speed of light (An accomplishment right there because nothing else does!) Then I feel equal amounts of guilt and frustration. Guilt because I’m saying I am but I don’t look ill (I know! Daft right?) and frustration because I feel like I should defend myself and once again explain the weirdness and unpredictable nature of this condition to another person who will nod sympathetically but not understand. Because “You’re looking well…”
But can I really expect my neighbour, (who is an intelligent woman) to understand something that even my doctor doesn’t really understand. Can I expect anybody to understand, when I don’t really understand myself?
I have an invisible illness. My friends Mum who was a doctor, refuses to even acknowledge that I have fibromyalgia not ME/CFS. (Rude.) When she bombarded me with questions over a picnic lunch, was she really saying, “You’re looking well?”, “I don’t believe you”? “You should be working?” Is she like the person who conducted one of my PIP assessments who basically took no notice of anything I said and advised my application be denied? Because “You’re looking well…”
When my well-meaning neighbour says “You’re looking well…” should I reply with a list of how I’m feeling that day. Should I reply, “Well, actually I feel like I haven’t slept for a year? Standing in the one spot talking to you is making me feel like I’m standing on exposed bones? My pain level is around a 7 but it’s better than the 10 it was yesterday? I was going to pop to the Co-Op but because we’ve had this chat (as nice as it is to catch up), I’m going to have to go and have a nap first?
Of course, I don’t say any of these things, I just say “Thank-you” and at the most I might add that “I’m ok today” I don’t want to be constantly reeling off my symptoms of the day like I’m a waitress in a very peculiar café. (Good morning. Todays specials are Dry Eye, Migraine and Inability to Let Down Urine and there is also an offer of Over Whelming Fatigue when you order a refill on your hot drink. I’ll give you a few minutes to peruse the menu then I’ll be back to take your order……)
My internal response to my neighbours’ polite enquiry or to my friends Mum and her interrogation (At one point I did think that she might start shining a light in my eyes – and not to check their health!) might be paranoia on my part and it’s that paranoia that makes me defensive. That makes me think that people don’t believe something that they can’t see.
But then should I be defensive? Shouldn’t I do what all the experts say and separate myself from the condition. Tell myself that I have Fibromyalgia, I am not Fibromyalgia. Shouldn’t I just enjoy the good day and not worry about how I felt yesterday or how I might feel tomorrow?
How do I do that? I can’t enjoy the day to the full because I have to ‘pace’ myself so that I don’t experience the troughs that come if I were to enjoy myself too much. I can’t join in with the dog walks I used to love at the weekends because I would get halfway and crash, if I managed to start the walk at all. I can’t go out and enjoy the sunshine because my body has lost its’ ability to control its’ own temperature and I feel ill after about 5 minutes. I struggle to get out and do the gardening because it requires too much heavy lifting (those marigolds weigh a ton!).
I have a bucket list of all the things I want to do but is what I really need is a bucket list of things I can do with Fibromyalgia.
It should be noted that I’m not a whingy person generally (at least I don’t think so………?) I get on with things and I keep my symptoms to myself (I even stopped bothering the Doctor because whatever my symptoms, it’s just something else that will be included within the syndrome) But lately I’ve started to resent Fibromyalgia. The experts argue over whether the problem is in the brain or if it’s an autoimmune disease, while I’m watching my friends going off to climb mountains (fools!) and finding myself jealous that I can’t (yet I think “fools” indicates my lack of desire to do so!)
Who has the answer? I don’t.
One rant all because someone said: “You’re looking well…”