Today's post is slightly different from the normal kind of posts I do and for a very specific reason. This afternoon I was catching a train home and at the specific station I was confronted with 4 flights of steep stairs and a disability lift.
As always I weighed up my energy levels, pain levels and mental state. I was not going to tackle the stairs this time. I had heavy bags, I am coming down with a cold and genuinely knew it would take me a long time to get to the top. For me the best choice was the lift, so I made my way over and managed to get in just as the doors were closing. There were quite a few others in the lift all of which you could clearly see had made the same choice as me.
So there I was, when I head someone say, very loudly and aimed right at me..."people like her clog up the disability lifts for me and it drives me mad when there are stairs".
I didn't know what to do, all eyes were on me, I could clearly walk in aided and suddenly I felt tongue tied. I couldn't respond with anything other than red cheeks and my head held low. I should have spoken up and said I have an invisible illness, but I was trying so hard not to cry all I did was stare at the ground. This for me was the final straw. I am fed up of being judged for the choices I make in order to live the life I love! So I came up with a list of 5 things that really should be avoided when you don't know someone's medical history or they don't look sick!
So here they are, I hope they help others to understand and if you know what I mean please share your experiences.
"My aunts, sister, neighbour, friend, had that and they got over it"
Firstly I would like to say thank you for trying to cheer me up! I am so glad that your friend, aunt, sister etc are better and feeling well! I know you want to give me hope and I will thank you for that. The problem is that there is no cure for what I have. There are drugs to help, but no cure, so that kind of hope may not be what I want to hear!
Please though, don't stop trying and talking to me, just know that I will never get better I will only get mentally stronger.
"It can't be that bad, you look so healthy"
Thanks, it's the ten tonne of make up I am wearing and the weight I have lost from the medications! I know you mean well, but it took me an hour to get my make up and hair done this morning and if you could see what is underneath your opinion may change.
I also look so healthy because I don't have many visible signs that I am sick! The rash is always covered with good foundation and my bald spots are well hidden under my messy hair do.
"At least your not going to die tomorrow"
I know you are trying to say that it could be a heck of a lot worse than it is and you are so very right. I will never be more grateful for the fact that I don't have a quickly progressive, terminal illness....I thank god every day for this ( or whatever I believe is god). The issue is that I have an incurable disease that can/will attack my organs including my heart, brain, liver and kidneys. I can't forget the fact that this is life long.
The issue is that saying this in this way is not helpful to my current predicament. I know you mean well and I love you for that.
"It can't be that bad, you still work"
I know you are trying to tell me to look on the brighter side of life. You are right I do work, I love my job and I am grateful to be able to still do it! On a bad day however, what I actually hear is "ohhh here we go she's moaning about being ill again".
I need to be able to speak about my condition, moan about it even, but saying that will make me feel like I can't. Even though I know your intentions were for the good.
"You will feel better after a good nights sleep/a rest"
Thank you for the advice, I know you are trying to help me and I love you for it, but don't you think I may have tried this? Oh I wish I could have a good nights sleep, feel refreshed in the morning and able to dance around my room before work! Unfortunately I will feel exactly the same when I wake up as I did when I went to bed!
The same level of tiredness, the same level of pain if not worse and I will still feel like the flu! Trust me when I say, I have tried everything I can to feel better....sadly sleep just doesn't work!
