Invisible Illness Awarness Week

Today is the first day of something awesome: Invisible Illness Awareness Week

The website http://invisibleillnessweek.com/ is an online community that offers advice and support for individuals living with a chronic illness, or more specifically, a chronic invisible illness. It also provides information for people who have friends/family with an invisible illness. An invisible illness is just that, a medical diagnosis that someone is living with but is not apparent just by looking at a person.

The list of invisible illnesses is extensive (and growing) so I won't get into listing them all (which is impossible anyways). Because the list is extensive, a group of individuals who all have an invisible illness will have to deal with different symptoms, prognoses, treatments, etc based on their individual diagnoses. But the one thing that they all share is that other people can't tell that they are ill simple by looking at them. As a result, many people with invisible illnesses have the same experiences - lack of understanding, validation, and support from family/friends/sometimes even medical professionals, isolation and loneliness, uncertainty about the future. I could keep going, but you get the drift.

Invisible Illness Awareness Week is an annual event held to promote awareness of the prevalence and impact of invisible illness. Instead of being located at an actual venue, like a conference hall or school gym, the event is held online - this speaks to the nature of the site itself, which aims to include people with invisible illnesses. People with invisible illnesses often fight with fatigue and/or pain, making it difficult to plan outings or travel long distance. So an online event with chat forums, blogging, Facebook, etc. allows for the inclusion of everyone. The use of blogs, twitter, and facebook is encouraged.

This year, Invisible Illness Awareness Weeks runs from Sept. 28 to Oct. 9.
The theme is "My Invisible Fight". People have been asked to write and share a blog post about an aspect of their invisible illness. I choose to talk about my struggle finding happiness despite feelings of loneliness, vulnerability, and defeat (link to that post is found here).

Some of the suggested topics included:

• a fight that you have that no one sees.
• one decision you fought to make that has been a good thing (or not so good)
• what treatment or medication did you fight for?
• how you keep fighting to live when life wants to get you down
• why you fight for awareness as an illness advocate (or just some man or woman who likes to make some noise)
• what advice you would give someone recently diagnosed about how to choose what to fight about and what to let go of.

An invisible illness has played a tremendous role in my life for almost ten years. Aside from the medical aspect of my diagnosis (chronic osteomyelitis), the loneliness and lack of understanding that I experience are probably the most difficult things that I have to go through. I think that sometimes all it takes to feel a bit better is to have someone who truly gets "it" and "it" being what you are going through. Having a support network of people who genuinely care helps us to get through the tough times - a shoulder to cry on, somebody to vent to when it all gets too much, or a person to go out with for a regular girls night out just to feel normal and forget being ill for a while. And I think that is what Invisible Illness Awareness Week is all about - creating that inclusive environment in addition to raising awareness in the general public about what it actually means to have an invisible illness.

That all being said, I think invisible illness awareness is really important. Until you ask somebody, you never know what they might be going through. So I encourage everyone to explore the website and this year's theme (My invisible fight) and, more importantly, to treat people with kindness and empathy.

Best wishes,
Jedida