I just had the most ridiculous email with a friend.
Friend was talking about a lady who has cancer for the 3rd time in 11 years. Incurable cancer. I responded by saying how horrible that is and how awful it must be to know you have this 'thing' hanging over you but not know when you are going to die - because the cancer lady has been told she is going to die and it could be within 6 months or many years... No one knows.
My friend then writes back...
That... we both have decent health don't we? And... we must count our [healthy] blessings.
Say what?
Speak for yourself!
While I, clearly, count my blessings that I do not have the 'big C', I sat there honestly wondering what the hell people think is up with me... For example, why I: live at home, don't work, barely go out, am not married/don't have kids, can't donate blood, can't drive...
I probably leave the house maybe a few times a year to go further than my local town because doing so leaves me bed-bound for weeks. Last time I went further than London (in 2011), I ended up with a massive hole, AKA an ulcer, on my body from the stress it placed on my system.
The more I think about it, the more I blame the fact I have tried to do a few classes this academic year, and that this friend knows about it, for the total lack of understanding and sensitivity. Never mind the fact I had to give up one class because I did not have the mobility to be able to do it. Of course I never mentioned that to anyone! I mean who wants to tell people that? I am doing 2 classes this year, one of which involves standing, but as it is an ACL course, they will just have to put up with my disability and I will do what I can within the time allotted (which is what I did in my other class). I am a try-er. I try things. Occasionally they work, a lot of the time I overestimate my body and come crashing down with a huff because I realise what my mind/soul/spirit wants to do is usually at complete odds with my body. Grr!
It really astounds me when people show their total ignorance of what my life is like because I feel that their lack of understanding makes it seem as if I'm choosing this lifestyle. Then I start to wonder if it is my fault for not being more blatant about what is the matter with me. I am quite an open person if people ask me, but at the same time, I am not one to openly go on about the things that are wrong with me. I have always been conscious of not wanting to me a Debbie downer, or 'the sick girl'. Recently, I had posted/shared some awareness material on FB - POTs and chronic/invisible illness stuff. I always feel uncomfortable doing so - I really don't want to be 'the sick one'. At the same time, there was something liberating and daring about it... about being honest and real. I guess most healthy-ish people don't read it or look at it though. As my Arab friend would say: shame on them in their 'normal' bubble.
It irks me to think that people are of the impression that I am somehow cruising through life quite happily... dossing around, pain-free, full of beans... and just lazy, because how else or why else would I be where I am at now in my life unless I was: a. chronically debilitated by x, y, z diseases, or b. a bum? I find it amazing that anyone would think I have willingly taken the life choices to be in my position. If we are being honest here... I am scared of my future - as I am completely dependent on my parents and they are getting older. I cannot on a daily basis reliably run a house -> cleaning/washing, bring in money to live on, cook for myself, look after the pets, get anywhere that requires a car - without them!
I feel better for getting this out. Hopefully now I can sleep!
It's like you posted in Facebook recently. If people see us acting strong and trying to do stuff, they automatically assume we are fine. There is just so much prejudice out there against sickness it saddens me. It's ok to be debilitated because of cancer but it's not ok to be debilitated by anything else. Healthy people consider that those with invisible illnesses are "whiners", "attention seekers" or "are sick because they are depressed" or if you can't see it it must mean it's just something psychosomatic or imaginary.
ReplyDeleteNobody knows we'd live a lot better without the negative attention brought to us by our illnesses and we'd just live better.
People who have no chronic health problems get to stay in bed because of a simple cold while we are out there doing the best we can and pushing our bodies beyond their limits every single day even though if it feels as if we'll die when we get home. Sometimes I feel so unwell it I think even dying would tire me.
I like your post and I like the things you post in Facebook.
Thank you!
DeleteWhat you wrote echoes how I feel. The older I am getting, the more I realise how people are and the more I value my friendships with other people with chronic illness. It is sometimes purely those friendships that keep me from having a total meltdown. I only feel understood by other sick people - what a sad reflection of society.