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How I see It, How They See It

When I received my diagnosis of lupus, the world did not change, at least not in any noticeable way. Of course, the world always seems the same even though it changes in all those small, imperceptible ways, which somehow add up to noticeable change at some point. And yet, somehow, the world did change for me with that diagnosis.

Who knew that getting my "official" diagnosis would open up a world of freedom for me? I certainly didn't expect it, and yet there it is. I know, you are probably reading this thinking I've lost my mind, which may be the case, but not the purpose of this post.

Let me explain. Before the diagnosis, I tended to hold my tongue when my friends would choose a place to go with a million stairs. Sore and swollen knees are not a good combination with stairs, trust me! I would just trudge along slowly, just focusing on each stair one at a time. Or my friends would want to go to some trendy place with the world's most uncomfortable chairs. Even worse, they would suggest a place where we would have to stand. And let us not forget the ultimate torture, they'd choose to do something in the sun. I suppose I could have said something. I probably should have said something, but honestly, with no idea what was wrong with me, I didn't want to sound like I was whining.

How do you explain that those trendy backless chairs aren't ideal when you are in pain? If you bring up all your concerns each time, well after a while, you just aren't fun anymore, and being no fun means not being invited out. At the same time, how you explain being too tired to go for a coffee when you haven't done anything other than getting dressed?

The diagnosis was like a card that allowed me to say there were too many stairs. People just seemed to understand once I said the stairs were too much with lupus. The same went for those uncomfortable chairs, sun, or standing too long.

I don't know about you, but I've learned that those who know about my illness now understand that asking me to go out for a cup of coffee requires me knowing where we are going and such.

While my friends can easily do a spur of moment picnic at the top of the park, I have to consider how I get to the top of the park and once I get there, is there a shady spot for me. My close friends are amazing people because these are things they look at before inviting me.

Sure, having a chronic illness changes your perspective on 'ordinary' things, but sharing the nature of your illness with friends and loved ones help to open a path to freedom through understanding.

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Jan 24, 2020

Hello Profupus,

I love how you approach your diagnoses. You transform something that some people might consider to be a setback. Instead, you use it as opportunity to help yourself and your friends enjoy each others company without hindrance. Your experiences highlight another important factor to consider when it comes to chronic illnesses- a strong support system. A strong and understanding support system, such as your friends, can allow individuals to manage their condition whilst enjoying their day to day activities. Thank you for sharing your experiences and I hope you continue to do so.

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