{"id":607,"date":"2016-01-17T17:00:19","date_gmt":"2016-01-18T01:00:19","guid":{"rendered":"http:\/\/www.amberbird.com\/blog\/?p=607"},"modified":"2016-05-17T18:06:14","modified_gmt":"2016-05-18T01:06:14","slug":"not-ashamed-someone-with-invisible-illness","status":"publish","type":"post","link":"https:\/\/www.amberbird.com\/blog\/2016\/01\/17\/not-ashamed-someone-with-invisible-illness\/","title":{"rendered":"Not Ashamed: Someone with invisible illness"},"content":{"rendered":"

If you haven\u00e2\u20ac\u2122t already, please read the introduction post<\/a>. That will give you context for this page.<\/p>\n

\n

First, in case it hasn\u00e2\u20ac\u2122t come up for you anywhere before, I\u00e2\u20ac\u2122m going to suggest you read this explanation of what we mean when we talk about spoons in the context of illness and personal capacity<\/a>. I will surely mention spoons, but I won\u00e2\u20ac\u2122t be explaining the theory of spoons. You might also find this post on different types of spoons<\/a> interesting, or at least a bit helpful in understanding this post.<\/p>\n

Though not the last item on the Not Ashamed list, because I wrote a few things out of order, this is the last Not Ashamed essay I\u00e2\u20ac\u2122m writing and publishing. As a fan of personal essays (at least when I\u00e2\u20ac\u2122m the one writing), I\u00e2\u20ac\u2122ve mainly enjoyed this. I love both the time spent in introspection and self-consideration, as well as the time spent writing. Fortunately, this looks to be a long post, so you will feel like you totally<\/em> got your fill of me. Heh!<\/p>\n

This particular post has been rewritten more times than any other, and I hope that I\u00e2\u20ac\u2122m still comfortable with what I choose to say here after I publish.<\/p>\n

Some context: I feel a bit uncomfortable writing about this because I know people whose invisible illnesses seem more impacting and unpleasant than mine. So, let me be clear that this isn\u00e2\u20ac\u2122t a \u00e2\u20ac\u0153who’s most ill\u00e2\u20ac\u009d contest or anything like that and that, at least from my perspective, I\u00e2\u20ac\u2122ve got it relatively easy on this count. However, the internet is full of posts by people with invisible illness, and you can google those and have a chance to put yourself in their shoes if you feel like that\u00e2\u20ac\u2122s useful. (I, of course, feel like it can help us be more compassionate to do such things, so I\u00e2\u20ac\u2122m voting that you do.)<\/p>\n

I also want to note that I\u00e2\u20ac\u2122m uncomfortable writing about this because it rubs up against my desire never to give myself victim status, as well as the fact that one of my invisible illnesses isn\u00e2\u20ac\u2122t something I really consider an illness (autism). It is too easy, it seems, to view yourself as ill and let that drop you into a mire of unhappiness and victimisation and so forth. However, I also feel like, at least for me, part of my learning curve has been to figure out how to be not-typical in a world that mainly makes token efforts to appear inclusive. And part of that, one of the hardest parts, has been getting myself to learn to work within the framework of my actual capacity rather than pushing past that, which is unhealthy and can make things worse. Sometimes, for me, thinking of even the things I wouldn\u00e2\u20ac\u2122t change (like autism) as an invisible illness helps me to look for more compassionate approaches to life. If I had a brutal case of the flu, I probably wouldn\u00e2\u20ac\u2122t berate myself for not managing what \u00e2\u20ac\u0153normal\u00e2\u20ac\u009d people do, nor would I actually push myself to even try to do things that are clearly just going to keep me sick or that are clearly outside my capacity. It\u00e2\u20ac\u2122s not an exact parallel, but it\u00e2\u20ac\u2122s one of the main reasons (the other is for solidarity with people who, I can see, have concerns similar to mine) that I don\u00e2\u20ac\u2122t try to completely reject this label.<\/p>\n

With all the discomfort, I\u00e2\u20ac\u2122ll not ignore my own privacy issues; I\u00e2\u20ac\u2122m not going to give you a list (though you can look at the Not Ashamed list and figure that being autistic and bi-polar go on that list). In reality, my approach is that I don\u00e2\u20ac\u2122t generally care to talk about my limits outside of specific moments where I\u00e2\u20ac\u2122m trying to honour my body or mind\u00e2\u20ac\u2122s atypical needs and limits.<\/p>\n

Okay. I think the last bit of context-giving is to just paste in some stuff from this page<\/a> on a site that promote Invisible Illness Awareness Week, because I know some of you won\u00e2\u20ac\u2122t go looking for this information (though it would be great for you to read that page; it\u00e2\u20ac\u2122s full of really interesting and eye-opening stats on invisible illness). From that page:<\/p>\n