So I thought I would share this with you today. It’s something I Put together relatively quickly a little while ago and only to share on my instagram.
For many of my teenage years I spent a lot of time feeling and knowing that I was seen and known as the girl who doesn’t go to school because she has “that sleepy illness”. So for a long time I did everything I could to change that, to give myself an identity away from the M.E (Epstein-Barr) that I’ve suffered with since the age of eleven. Starting an outfit diary by documenting my daily looks with a camera that my boyfriend bought me and putting all my focus into my style, my outfits, which was my art, my creative outlet, which would then eventually turn into my blog LellaVictoria.
This worked and I achieved what I wanted to achieve. Now I feel as though I’m starting to come round full circle and I’m ready to start talking about the M.E once more. Over the years I’ve occasionally done the odd post on how it effects me but in all honesty I wanted to keep that part of my life at a distance. That was until now. I feel as though I’ve reached an age or at least a time in my life where I feel a lot more secure about discussing it. Sharing my thoughts and feelings on different aspects of this mystery illness. I call it mystery illness because there’s very little known about this in the medical world but more on that in a future post.
Today’s post is more about focusing on the certain things that are often said to people who have M.E or likely any unseen illness. My definition of an unseen illness is pretty much based on when someone is suffering in ways that aren’t obvious to the eye. So someone who has disabilities doesn’t necessarily come with a wheelchair or need crutches to help them walk, I hope you get the idea. For years I was, and still am at times, sensitive to the ill informed, common opinions and assumptions that a lot of people tend to have towards people like myself.
I dont blame them, as it usually comes from a place of simply not knowing much about these illnesses. And I have to say sometimes we, the people who are diognosed with these illnesses, are at times a little responsible for not helping that situation. In my case and in the case of others that I know who suffer at the hands of these mystery/unseen illnesses often aren’t very open to talking about what they suffer with and how it effects us. This is usually because of past experiences where we have been met with ignorance and judgment, so our subconscious teaches us not to talk so openly about it to save our feelings from getting hurt.
Now I recognise this and belive it’s a 50/50 split if we are going to make a change. It’s going to take the first half, us, to continue talking about our hidden illnesses rather then pretending to people like it doesn’t exist to save ourselves from awkward looks and assumptions. And it’s going to take the other half to listen, to learn and to be more open minded and understanding rather then responding in a way that can be hurtful in ways they don’t even know.
I appreciate that in the times we live in, everyone has to be soooo very careful about what they can or can’t say and trust me I’m not trying to add even more eggshells to that game. I’m just coming from a place that wants to help educate people and give them more of an understanding of how words are powerful and saying certain things to someone with M.E or an illness alike can have quite the effect. Because you must understand it’s the passing comments like “ you don’t look unwell” are the sort of comments we don’t just hear once, it’s something we tend to hear a lot. So if i can play a part in helping to lesson that, then i’m ready to.
The above picture gives a few examples of what people with mystery/unseen illnesses face in social situations. I’ve also given a couple of examples of how I belive these situations should be met to achieve a more positive place of understanding.
I would love to know if anyone has read this today and what you think. If you know someone with M.E or an unseen illness alike and if you think they might like this post to share with people, then please share because I really want to encourage discussion of this. If you would like to contact me privately about this then please do so and I’ll do my best to reply as soon as I can. My email firstname.lastname@example.org.
I hope you enjoyed today’s post. Sending you lots of love and light.