I’m fine seems to be the mantra I have adopted since becoming chronically sick with Ehlers Danlos Syndrome (EDS HT), Postural Orthostatic Tachycardia Syndrome (PoTs) and a Cerebrospinal Fluid Leak (CSF leak) which has occurred this year, to name just a few. It has become such an ingrained phrase in my vocabulary that I have uttered the words without thinking to a doctor after being blue lighted to hospital. I think it is some kind of self preservation mechanism as when you are chronically sick you soon realise that people really aren’t that interested in your latest symptoms. When asked you reply without thinking because you will do anything to move the conversation forward. In a complete contradiction to what many people seem to believe about those who are chronically sick, we don’t like the attention that our conditions bring, so by saying I’m fine we can stop the conversation in its tracks.
Being sick can turn you into a bit of a fib teller, who really wants to know that you have pissed yourself because your bladder decided to empty itself when you answered the front door? Maybe they’d like to know how my bowel stopped working for 48 hours and when I eventually went I blocked the toilet? R.I.P toilet brush, you put up a valiant fight, your efforts were not in vain. Being ill is not Hollywood glamorous, our bodies can quite frankly be disgusting in the symptoms they throw up (pun intended) so why would I want anyone but the closest people around me to know how I really am?
Many people I know with chronic conditions really downplay their symptoms even to other chronically sick friends. We are constantly aware that over sharing can cause not only disgust but the accusation of attention seeking. I am also aware that there are so many other people who are much sicker than I am, so I feel that I can’t speak up because it would make me look weak in front of my peers. So you end up in the ridiculous situation where no one is telling the truth about how bad things are until you hit rock bottom. And even then when destination rock bottom is reached, you fear the condemnation of others who don’t believe you or who simply disappear on you when you need them most.
In the last couple of years I have had to endure the experience of disappearing friends when things have got tough. Being investigated for a possible tumour in your pituitary gland? Eat my dust. Got a confirmed CSF leak? I’m too busy to see you. Why would you put your head above the parapet and actually tell people that you aren’t fine when you are treated like that? So many of us have learnt the mantra of “I’m fine” that when things are truly awful, we can’t face telling people things are far from fine.
It has turned me into a bit of a liar where my health is concerned, there are very few people who know how I am on any given day and even then they will only get the edited highlights. However that can backfire as we are so focused on being fine that when we need to ask for help we can’t. I have a feeling of shame when I have to admit to myself or others that I can’t manage. A few months ago I asked my gp for a referral for an updated care plan in case of emergencies, if something happened to hubby as I couldn’t manage alone. His response was to give me a website to contact, when he had already been told that I couldn’t sit up and he was the one who diagnosed me with low pressure headaches aka a CSF Leak. My years of telling him that I’m fine spectacularly came back to haunt me.
This piece was inspired by a conversation with my good friend Sharon, who herself faces many health battles. I consider her condition to be worse than mine and she considers mine worse than hers. We are reasonably honest with each other but I also have a tendency to minimise my symptoms and I am sure she probably does the same with me. She is the person I am most honest with but I sometimes feel guilty for moaning to her when she has things so rough herself. She also freely admits how hard she finds it to ask for help, she like me is determined to be as independent as possible and not a burden to those around her. We laugh at how we both frequently say “I’m fine”.
Hubby usually gets an edited version of how I am if he is working as I don’t want him to have the stress of worrying about me whilst he is trying to earn a living. I have been known to put on a brave face until the minute he leaves the house and then crawl to bed, just because I know it will make him really anxious if I tell him the truth. When he is home from work I will also fight my symptoms for as long as possible down playing them so I don’t have to go to bed. A lot of times this year it’s not been possible as the head pain caused by the CSF leak only lessens when I lie completely flat.
I learnt quite early on in my chronic ill-health journey that when people ask how you are, they really want you to reply “I’m fine and you?”. They don’t want to know what is really going on. Society seems to have a real issue with those who are ill, just look at the obituaries and you will see phrases like “bravely borne”, “brave battle” and “courageous struggle”. Even when dying those who are sick are supposed to paint a smile on their face and not “give in” to their illness. To admit that things aren’t fine and dandy is to show weakness, allowing your condition to have the upper hand. In the chronically sick community people describe themselves as warriors or zebra strong, I don’t have a problem with how people want to label themselves but I don’t feel very warrior like or zebra strong when my head has been down the toilet for a few hours due to my CSF Leak.
People who do not deal with illness on a daily basis can end up feeling lost or hopeless when confronted by those who have a chronic condition. I know looking back that before I got sick I had no understanding at all about the issues faced by those who were dealing with symptoms outside that of normal illness such as a cold or flu. We seem to struggle to fully understand unless we have walked a mile in someone's shoes. Now I am part of the community I am embarrassed by my previous ineptitude. It doesn’t stop my anger towards though who profess to care but negate what I am going through. I also don’t want your response when faced by my reality to be to give me unsolicited medical advice.
It is a difficult tightrope act that each community performs, for the sick it is do we trust this person enough to go beyond the usual I’m fine and for the other it’s having the honesty to admit that sometimes you don’t want to know all the gory details, without making the other person feel guilty. It doesn’t help that during a consultation with a long gone doctor I was told I had provided him with too much information or that on another occasion I was told I spent too much time on the internet looking up syndromes to have. If those that are treating us can’t provide empathy and understanding, is it any wonder that we resort to lying, even to those who are supposed to be treating us? If they aren’t listening then what’s the point in saying anything other than I’m fine?
The other side of the coin is that there are so many things wrong, if someone were to ask me how I really am, how much do I tell them before their eyes glaze over? Let’s take today as an example, I have a rapidly amplifying headache from my CSF Leak which means if I don’t get more caffeine in me or have a lie down it will go from annoying to excruciating. I have TMJ (Temporomandibular joint pain) caused from my trip to the dentist on 16th November where I had to have my jaw open for 30 mins and was moved around (not roughly) by the dentist. This means that all my teeth hurt, my jaw hurts and closing my mouth hurts. So I am on a diet of soup and soft food to help it settle down quickly. I am unable to maintain my body temperature so I have an excessive amount of layers on in an attempt to keep warm. My fingers are swollen and stiff, so typing has been a joy. Various joints around my body are emitting low-level pain signals. By low-level I mean less than a 6 out of 10 on the pain scale. Are you bored yet?
When I say I am fine what I mean is I am my normal level of shitty health. If I admit to you that I am in pain, it’s probably creeping towards a 7 or 8 out 10. If I tell you that I am really bad / awful then I am probably deliberating about whether or not to get outside medical assistance or if I need to get hubby home from work. What I am fine doesn’t mean is I am ok, I am symptom free, it’s as if I have never been sick because those days just don’t happen.
I’m fine means I can cope with what is being thrown at me without resorting to extra pain meds or going to bed. However what may have been I’m fine an hour ago could be it’s not good an hour later. My body has a tendency to misbehave, move in the wrong way I could end up in severe pain from a trapped nerve in my back or muscle spasms that have me walking like a great ape. PoTs symptoms can strike at any moment with chest pain and palpitations. My blood pressure could plummet causing me to faint or feel the urge to sleep. I just don’t know what is going to happen when and everyday is spent like this.
Obviously for those of you who read my blog on a regular basis, you know that I am anything but fine. You know I should be winning awards for my ability not to look sick or portray how sick I really am whilst out in public. So I continue to play the “I’m fine” game and the only person I am hurting is myself.