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Why I Share the Positives and Negatives in My Life for Migraine Awareness Month


June is Migraine Awareness Month and because I suffer from new daily persistent headache (NDPH), I have been posting something each day on Instagram about life with this condition. I find it important to educate others about the way this affects my life because there is little understanding in the general public about the very real issues headache conditions, and chronic illness in general, can cause. However, I get the feeling that I am sometimes more of an annoyance or white noise to those I want to communicate with the most.

 

I know other “spoonies” or people who deal with conditions like mine understand my daily life. They are not really the ones awareness months are for because, in short, they are already very aware. So often though, I feel my posts that show the reality of my life are skimmed over and forgotten, while the posts that are considered to be “positive” and “inspiring” are celebrated.

Don’t get me wrong, I’m all for encouraging moments and finding the good in a sea of so much struggling, but not when it eclipses reality. Most moments are not mountaintop moments in everyday life and I want to be able to share those as well without being considered whiny or depressed. My reality is that I have lost most of what made me, me. A lot of my favorite things to do are currently not options for me because of the limitations my illness(es) put on me. My acknowledgement of this is not negative or depressing but rather a statement of fact.

If I want to bring honest awareness to this condition, I want to share all aspects of my experience. I want to be as transparent as possible and show both the positive and negative effects of NDPH. There are things I have learned through this journey that I don’t think I would have been able to understand had I not had this illness, but the loss and grief I’ve experienced are also very real. I don’t share these things for show, but rather to start a conversation and bring more understanding to those outside the circle of my daily life.

So when you’re scrolling through your news feed today and see yet another article shared by that friend with the chronic illness, take the time every now and then to look at what they are posting. Let them know you care. Chronic illness is one of the most isolating things I’ve ever experienced and it means the world to me when someone takes a moment to learn a little bit more about the way my life has been molded by this condition. Awareness events are not for those affected – they are for those who have been fortunate enough to not have had this experience. Please be open to learning.

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Thinkstock photo via SIphotography.