I have been fairly open about the fact that I was diagnosed with M.E at the age of eleven and have had it ever since but in contrast to that, it’s not something I speak about very often on the blog. This is not because I am shy or embarrassed by it, not at all, as it has shaped who I am today. I just like to keep my blog to mostly style related content, as this is my way of expressing my creativity.
Ever since I was diagnosed by a private specialist, I have come on leaps and bounds in comparison to where I was at the age of eleven. Though I am grateful for this, it still continues to effect my everyday life and quality of life. There is a magnitude of symptoms I have to wake up and face everyday but thankfully I am a very determined person and do everything I can to persevere through this. The problem has been and continues to be healthcare people. I am constantly judged on how ill I am, whether I should or should not be working a job. There continues to be this grey area of misunderstandings when it comes to mystery illnesses such as M.E. Healthcare professionals seem to not be able to comprehend that just because on our good days that I or any M.E diagnosed individual is able to get up and get dressed and with any luck do a few normal household activities, that this must automatically mean we are able to hold down a full or part time job! This is NOT the case.
I have for years and years come up and fought against small minded people and “professionals” and I have consistently heard, “but you look well” or ” you just can’t be bothered” “why don’t you want to work” “if you can get up and get dressed, you can work”. The complexity of M.E is still something I am getting to grips with all these years later but I know my body and what it’s constantly up against daily and I also know myself and my level of determination. If I thought for a second I could hold down a job without burning out after day five, then believe me when I say that there is nothing I would want more. I would love to have my own source of income that comes from hard work and not having to feel socially awkward in social situations when always asked ” so what do you do?” because trust me, there is nothing more embarrassing when having to reply with “I don’t work”, which only leads onto more questions, resulting in having to open up about the M.E which usually results in that look classic “you look fine” response. It’s exhausting sometimes just trying to look better in the hope it might make me feel a bit better but then to only realise that this only seems to gets used against me.
I’ve even experienced envy from people, like I should count myself lucky that I don’t have to work and that they are somehow hard done by because they have the luxury of being able to pursue a career. It’s quite revolting when I think about it. Though I say all of this you must understand that I am at peace with my situation, though I wish I could be more financially independent, I can’t deny that being at home everyday has afforded me the luxury to really discover who I am as a person and well, it lead me to this blog, which in turn has given me some seriously incredible memories. I have met wonderful people, and seen cities that I dreamed of seeing and for that I must be thankful.
I guess I needed to get some things of my chest because lately I found myself back in a position where I have been unfairly judged by someone who is seriously uneducated in what M.E is. I am once again reminded that unless I am wheelchair bound, being fed through a nasal tube then I am deemed fine. There definitely needs to be more awareness and understanding of the grey areas that come with M.E because its not fair to keep fighting injustice based on a lack of will to truly get to understand what it is that people with M.E go through.
If you suffer with M.E or know someone who does or maybe even faces the same judgment for a different misunderstood illness, then please feel free to comment or to share this post in case it might help.
Take care and wishing you a wonderful weekend,
(old) Topshop Boutique Coat
Urban Outfitters Knitwear
COS Wide Leg Trousers
Le Specs Sunglasses