Most of the time we look ‘normal’ and ‘healthy’. Some days are better than others but, does not mean that on the relatively “good” days we are free of pain. I do things at pain levels others wouldn’t even consider moving at because if I don’t, I won’t have a life. This does not mean I am having a good day, I just managed to power through and managed to be stronger than it for part of a day. There is no miracle cure, there is no quick fix and certainly in my case not a break from the pain.
You can hide a lot with a bit of make-up and a smile on your face. Sadly, this is how a lot of us prepare ourselves for the day ahead as it is much easier than having to explain what is wrong. Many of us do not make a fuss and we fight through the day despite the pain/fatigue and an array of other symptoms that either come with the illness or come hand in hand with the numerous types of medication we are on. It only tends to be our nearest and dearest that see the full extent of what we have as they see us first thing in the morning when the pain can be at its worst and will see how the smile fades and we crash as soon as we get home.
At the Fibromyalgia group, I am surrounded mainly by people older than me, both with new and old diagnoses. Many of them can’t imagine what it is like for someone so young to deal with the condition. You haven’t been able to see the world yet, you often can’t drink because of the medication and the pain and fatigue pretty much wreck any sort of social life you may have once had. Being young and sick is a bit like being elderly, expect you lack the ability to be able to reflect on all of the great times and experiences that you once acknowledged. Instead, we bitterly observe our peers make the memories and strides that they will fondly look back on in the future, wishing and hoping that we could have our chance once more to do the same.
It isn’t all doom and gloom though. When you battle a condition like mine, you realise who the real people in your life are. Those who make the effort to understand what you are going through and stick by you even when you have cancelled for the fourth time in a month, are the people worth being surrounded by. You have enough to deal with so having a close circle of people, whether it big or small, gives you less to worry about and lets you know who you can call even on a bad day.
Just remember that people will always have their own thought and opinions on the subject (which they are entitled to) but, it is in no way your problem if they feel the need to be judgemental. Value the input you get from those who love, support and most of all, believe you! The worst thing you can do to someone with an invisible illness makes them feel like they need to prove how sick they are. Nobody really realises that some people have to use a tremendous amount of energy merely to be normal. I am what a person with an invisible illness looks like. I do not look visibly ill, in fact, I probably look like any other person of my age. Unfortunately, one of the worst things about having an invisible illness is that many people do not understand as they can’t see anything visibly wrong, therefore, leading to them sadly not believing. You don’t have to see to believe! Just because an illness is invisible does in no way mean it does not exist.
To be honest my illness isn’t really invisible as if you look closely enough, you can see how it has changed my life on both a small and large scale. For example getting on a bus or train and realising there are no seats and the sinking feeling you get knowing that you are going to have to stand for the duration of your journey. A few times I have been left in the same situation even when I am using my walking stick. Clearly, I look too young to need a seat with or without a walking aid which is ridiculous!
|(My Mum & I on our way back from one of my Fibro Meetings last week. My legs had given up by this point and my brain had switched off but, still smiling.)|