With this week being National Invisible Chronic Illness Awareness Week, there have been so many places to go and learn so much. Not just about living with a chronic illness, but about living…period. As we read and write from our hearts about the experiences we encounter with our health, there is a common thread throughout. That thread is compassion.
According to Merriam-Webster online, compassion is defined as “sympathetic consciousness of others’ distress together with a desire to alleviate it“.
I read and think about the many voices that are out there trying to bring some light to the fact that illness is present, even if it isn’t clearly visible. I know that the many people who are reading these blogs are people who have illness, therefore, they don’t need to be convinced or have light shed on things – they know it all first hand. What about those who are the skeptics, non-believers….you know, the ‘healthy ones’ ? Are they reading the experiences and learning new information so that they may ‘know’? Or are they avoiding it all because, if it isn’t right in front of their faces and in plain sight, they don’t ‘see’ what the big deal is? Do they just ‘see’ a bunch of people getting together to talk about their problems and looking for sympathy?
I have to confess that I prefer to keep my illness invisible – for many reasons. Here are only a few:
One is that I harbor a great deal of crippling independence and stubbornness. I don’t want rescued and feel insulted when it is implied that I cannot do what I need/want to do. You can only imagine how well that translates into some pretty impressive lupus flares.
Another reason is because I do not see who I am defined by the illness my body creates. I don’t blame myself for being ill nor am I shameful for having lupus, but I do recognize that my body is doing ‘this’ to myself. Others already know that, otherwise they would see our illness, right? Cancer is the evil ugliness that is threatening someone’s life and they can spot someone with it miles down the road. Lupus is my own immune system that just isn’t ‘getting it’, and will never ‘get it’, leaving me vulnerable for an undetermined number of years. Unless I limp or lose all my hair (both of which I seem to be working on), then it’s pretty tough to really believe I struggle. I’m not going to get attention by being obviously sick – I want to show what I am actually capable of, talented at and can offer in any role I place myself in. So, to identify myself as someone with lupus would potentially overshadow the aspects about me that are worth something for others to see – and being “with stupid” isn’t exactly one of them.
Dodgeball. That is another reason why remaining invisible is preferable. Being the last person picked to play. The last person called for social events (knowing there is a chance I will cancel last minute). The last person to be assigned the project (because I may miss some days at work and jeopardize completing it on schedule). The last person to ask “How are you?” for fear of me actually telling them. The brutality of the game isn’t getting clobbered by a rubber ball – repeatedly. It’s really that the person who is last chosen is the one who no one wants to acknowledge. That cuts deep into a person’s self, slicing it into so many pieces and I already feel the chaos of not recognizing myself. Why would I seriously choose to stand there waiting to be smacked around even more?
The answer to that question, however, is what leads me to write during this week’s event.
I admit that I have compassion. When I have a good day – one that is without flares or other lupus symptoms- I feel a twinge in knowing that there is someone else who isn’t having such a great day. The twinge isn’t guilt. It is a reminder that if I can do something to help someone living with lupus or other chronic invisible illnesses by joining in on the discussion, learning as much as I can and encouraging as many writers/patients/friends to continue to live using their own definition of wellness…then I need to.
When did sympathy become such a dirty word, anyway? If we also look at how sympathy is defined by Merriam-Webster, we see that it is “an affinity, association, or relationship between persons or things wherein whatever affects one similarly affects the other“. This week is about shedding light on the fact that we all do share an affinity with each other – health. Thing is, unless you live underground and only come up for air every four years, this country’s health is embroiled in a heated debate. That does affect every one of us – living with illness or not (yet). This week and every day, those of us living with an invisible illness are merely looking for some compassion. Being conscious of someone struggling and having the will to help do something to ease it.
I don’t expect people to develop lupus so that they can get a taste of all the fun I’m having – that would be mean and pretty unnecessary. All I ask for is a little compassion from people to see a person with a struggle, whether there is an “I AM ILL” banner running across their forehead or not, and have the courage to want to do what they can to ease it. I don’t ask this from people out of entitlement, but simply because tomorrow, there is an increasing chance that they could be in some health trouble, too.
No matter how you define it, I know for certain that a little compassion is what you would want, too…you see?
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We’re counting down to this Saturday’s Portland Mad Hatter Walk & Roll Lupus Fundraiser – there are flyers around town to gather sponsors and donations for you to come join us. If the walk isn’t for you, you can also participate in a fundraiser yourself! Collect donations for every mile you go/lap you swim, reps you do during your weekly workout at the gym. Ask your family/friends/neighbors/co-workers to donate one of their daily coffee splurges. On our blog, there is a health organizer where you can purchase it to help you and donate 10% of the purchase to the PNW chapter to help others. If you can’t make it this weekend – we hope you do – you can always be part of making our PNW supportive for those living with lupus!
