I'll tell you right now who pissed in my corn flakes today,
My name is Eileen, the sometimes mean, likes the medicinal green, Arthritis x2 fighting machine. I am pretty sure most crabby old ladies probably have a form of Arthritis, but I am not an old lady. I only have an old lady name followed with a disease that has a stigma behind it that only old people get it. I sometimes like soup because arthritis in my jaw makes chewing hurt. I often go to bed by 8pm. I am a sometimes feisty 32 year young woman with chronic illness.
Depression is a common symptom of Arthritis. You can't tell someone with depression to just cheer up for it to work.
I know I don't look sick but my body is aching, I feel dizzy or nauseous, like I have the flu or a hangover plus more 24/7. You can't really tell because I am so used to hiding it from people. I don't want strangers asking me what's wrong when I am out in public. I don't like it when a stranger tells me the look on my face looks like I hate life. What I hate is my illness, stopping me from having a good time, thank you very much. It's awkward being in public when you are ill. Especially drunk people who don't understand "no" or why you aren't a party animal.
The painstaking truth about living with a disease that is so misunderstood is the ignorance of so many people around me and when you can tell they lack empathy because of it. Those with Arthritis get tired of the lack of compassion and empathy they experience from so many simply because people don't take the time to really understand what someone is going through. You can't always tell what someone is going through, chances are when you see us, you don't see us at our worst either.
My illnesses may be invisible, but I am not. So don't touch me. Mmmmmkay?
How many times people say things about perfectly able body looking people in a crowded elevator. I see people who stare at me, I know they are wondering why I am there. I could walk up the stairs, I am young and healthy, right? I must be lazy. When I have my tiny son's hand to hold no one gives me that look, they get why I would be on the elevator or using the wheelchair spots on public transit But what they don't see is the Rheumatoid Arthritis and Osteoarthritis that is attacking my joints and my immune system. I am grabbing at those handrails for a reason, my balance sucks.
Crowds are particularly difficult for me now. People bumping into me, my body hurts. Be considerate of others. I live in a city that has a large Asian community and like most Vancouverites, we've noticed some of the Asians can be a tad bit on the pushy side. I realize it's because their culture and population where they are from however, my father lives in China and tells me how he refuses to drive there. However no one likes to be pushed by anyone, especially when in pain and having balance issues. I've found myself wanting to say "You know what, I am in probably in about as much pain as you are little old lady, you too can be considerate!". I realize accidents happen. I sometimes bump into people because my right knee and left hip are wonky, I have balance issues. A sorry goes a long way, eh!
Responses To My Illness
I don't hide my illnesses. There is no point to that anymore. If someone has an issue with me having a very natural thing happen to my body, the problem is with them. I tend to notice different people respond differently to when I tell them I have Arthritis.
The Sympathetic Person
The one who knows someone with the illness and knows what it does to them. They get it. I am not craving their sympathy, however acknowledging what I just told you goes a long way for us chronically ill sometimes.
The No Response Person
I get talking about your health to some people seems annoying, whiny or awkward but maybe I am telling you for a reason? That moment I am not feeling well, like really not feeling well and I just need to get it out. Or it's about to interfere with our conversation or whatever we are doing, maybe I just had a bought of brain fog and I want to explain why. Maybe it opens a comfort zone to me to new people, exposing my disability to you is major when it is otherwise invisible. It's not about their sympathy or attention either, it's just that they acknowledge what you just said to them and heck even just acknowledge you as a person. Being chronically ill or disabled can mess with our heads a lot, we don't want to feel so isolated and forgotten.
The I Have That Too But They Don't Really
They think arthritis is just achy joints. They don't know the difference between Osteoarthritis and Rheumatoid Arthritis. People don't like to be wrong, so often you can't point that out to them. Also people really like to just focus on themselves sometimes.
The One Upper
Chronic illness is not a competition.
The Quickly Get Away from You Person
As if I will magically make arthritis contagious. If only for one day I could so I could teach a few lessons.
The Curious Person
There's always the person who will ask a million questions once you open up about you illness.
Pain Makes You Short Tempered
You try being a total peach each time you are in pain. The truth is: Arthritis hurts. It's draining, it's exhausting and we've probably been fighting this battle for a long time or we might be brand new at it and going through emotions we don't understand yet. It's hard to always stay positive. It's also up to us to apologize for the mistakes we make due to our illness, we are truly sorry and we often feel great guilt.
Let's face it. Telling someone off can feel damn good. But only if they really deserve it. Or maybe you've just had enough of their bullshit. Ain't nobody with Arthritis got time for that.
I am not listening to you or I have forgotten something important.
Maybe I seem like I am ignoring you or I don't want to talk. You're probably right. I am doing so because I am so damn tired and probably can't remember your name let alone barely remember my own. I might seem out to lunch or unable to follow what you are saying, well, that's true. At that moment I have what is called Cognitive Dysfunction or Brain Fog. I don't get out a whole lot and when I do it's always way past my almost no choice bedtime of 8 or 9 pm. Not because I have to go to work early in the morning but because by that time of the day I become a blubbering idiot at about that time. I can barely put two sentences together, I get lost and confused easily and my pain increases to the most painful part of the day and I am just so damn tired.
There could also be I think your problem isn't something to freak out about.
Can seem very flakey
Trust me, if anyone is bummed about this it's me. Think of all the times I have had to cancel or not attend things, like my own birthday party, because my disease is once again flaring too much. It really sucks.
Can seem selfish
Chances are my spoons are just used up. Or I just don't have the money. It's hard to explain to others that even the simplest of things require large portion of energy we don't have. Even thinking or the slightest movements at times. Sometimes even the simplest communication can seem like an overwhelming task to me.
Ok... I am going to smoke a big one and chill out. Reminder, if your arthritis and chronic pain is making you grumpy, it's happens, do whatever you need to calm down. And please keep in mind this blog post is ment for humor purposes.