no one cares it's not cancer

Why no one cares about chronic illness, part 3

Read my much angrier part 1 and part 2 for background context of this post. 

I’ve learned a lot about humanity through having a chronic illness. When you’re sick you really see the best and the worst of human beings. I have been on the receiving end of some wonderful service, and I have also been on the receiving end of some callous and spiteful treatment. At times it as caused me to lash out in anger (as in the previous versions of this post). At times it has filled me with wonder at the goodness of humanity as people have reached out and touched my life. At times it has made be realize how most of humanity is just oblivious.

I’ve been pretty busy lately in the online world and all of my activity has illness related. I’ve had several articles published, which has been wonderfully rewarding and has given me the opportunity to come in contact with lots of amazing people. I’ve also continued to do work for the Texas Lyme Disease Association, something that I love and takes a significant amount of my time and emotional energy. And yet I am continually surprised by the amount of people who don’t care about these achievements. Most of the support I received (outside a few members of my family, who are always amazing) from having two articles published was from internet strangers. I’ve also had several people express surprise lately when I’ve mentioned my work with the TXLDA. I’ve been working for them for THREE YEARS and have mentioned it many times, but it never seems to click with anyone. I can’t help but wonder why none of the things I do stick with people.

I think that chronic illness makes people uncomfortable and so they tend to filter it out. No one wants to think about long term illness because it means confronting the very real fear that someday it might happen to them. Illness makes people so uncomfortable that they don’t really know how to respond to it, even if they want to. Many people don’t know what to do about individuals speaking openly about their problems in general, much less people speaking openly about a lifelong illness. It’s a tough subject and it tends to bring out some raw feelings.  It’s frustrating to me that people might be letting their feelings stop them from paying attention, but I also understand. I wish that things were different, but I acknowledge that I only have so much power to make them so.

I cannot force anyone to change, but what I ask is this: if you have a friend or loved one with chronic illness please keep in mind what they are going through. Ask them about about their illness, find out how they live from day to day, ask them what their future holds, ask them how their care could be better managed, ask how you can lighten their burden. Ask them all these things and support them. Just do your best to love them. You will make mistakes and so will they, but please keep on. It will make all the difference.

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