Tuesday, September 9, 2014

Just One Thing

For those of you who aren't familiar with Invisible Illness Week, here's a description.:

September 8-14, 2014 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including some chat sessions September 8-14 online with special guests.
2014’s theme is JUST ONE. “You may be just one, but you are one of over 100 million people who live with a chronic illness, and most of the illnesses are invisible. This year, choose to do JUST ONE THING… Whether it is to blog, post on social media, talk to a friend, share an article with a loved one…. do ONE thing that will make a difference.
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com
 Today, I'm going to blog about Just One Thing. One thing that I can do to make a difference. One thing I can do differently. That thing is to start being more open about my illness. To be able to ask for what I need from both family and friends. To not be embarrassed to post about it on Facebook (though not excessively.)  It's taken me a long time, but I've finally figured out that people cannot read my mind. Many times,  I will do things I'm not up to doing simply because I don't want to disappoint someone. And, honestly, I usually want to do things. Being chronically ill is isolating enough and that makes it very hard to turn an invitation down. If I'm not up to something, I need to tell that person. And, maybe even come up with alternate plans. For example, I may not be up for a trip to the mall, but I'd be fine with renting a movie, picking up snacks and just hanging around the house. 

With my family, I need to be honest with them about my limitations. I need their help with household chores. I keep thinking that if I get the confirmed mito diagnosis that things will change. But, honestly, I already have two confirmed diagnosis and that hasn't made much of a difference. I don't want people thinking I live with lazy, uncaring people because that is not case. It's just I haven't been firm about things. I've always just done most everything. I somehow need to get the point across that I need help. I've thought about going on strike. But, I'm afraid that might not make much of an impact. So, what I plan on doing is to have a family meeting and tell everyone what I need help with. What I will and will not be doing anymore. Then, do what I say. Follow through is so important. 

I really need to learn how to use social media to not only spread awareness about chronic illness, but to let my friends know how I'm doing. Let them know what I need. There has to be a way this can be done without coming across as an attention seeking hypochondriac. I think this will be the hardest thing to change. 

I'm going to close here as I've already lost what I've written several times. Before I go, I'd like for you share things that have helped you become more open about your illness. How have you been able to share your needs with your family and friends?

I'm looking forward to hearing your suggestions. Thank you!


  1. Hi Shari,

    Thank so much for sharing about the just one thing you will be doing! I admire your bravery and honesty.

    It sounds like we have very similar symptoms. I have EDS III, dysautonomia (POTS, gastroparesis, sleep disorders, etc.), and some of my specialists believe that I have a mitochondrial disease as the root cause for my dysautonomia. We haven't been able to confirm that with testing, but I am taking a mito cocktail, and it does help me to have a little more energy.

    One of the things that has really helped me to be more open about my illness is blogging. When I blog about dysautonomia I have time to think and type up what I want to say. Brain fog isn't as much of an issue because I can take all the time I need, unlike in a conversation.

    Blogging also helps because I don't feel like I am boring people with medical details that they don't want to know. If they are interested, they can read; if not, they don't have to.

    Friends and family have said that my blog helps them to better understand what life is like for me. And I think it helps them to be more comfortable to ask questions when they want to know more about my life with dysautonomia.

    I wish you all the best with your blog and sharing your life with others through your words!

    Blessings and joy,

  2. Rachel, Thank you so much for your kind words. You've given me a lot to think about regarding how I can use my blog to help friends and family members understand what I'm going through.

    I really enjoy your blog and your words have helped me a lot.

    God Bless You.