Posts tagged invisible illness
How to be a Fierce Medical Advocate for Your Child

Having a child with complex medical needs is never the plan, but rather something into which you’re thrown, head first.  When you have a child like Addie, it’s important that you advocate for her ferociously. My role as an advocate for her started in the NICU -It was the first time I really thought that I needed to question the plan. These professionals weren’t seeing what I was seeing.  I needed to voice my concerns.  It was at that moment I stepped into the role as mother AND advocate, and I haven’t stepped out since!

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Dealing with an Invisible Illness while Looking Adorable

Adeline struggles with chronic medical issues, multiple diagnosis’s, and happens to look “normal”.  From the outside, she does not appear sick.  Itcan be frustrating, unhelpful, and sometimes a struggle to get her medical or early intervention team to get the entire picture.  I wanted to share a little bit of what we experience and then ways you can be supportive to a family/person who deals with an invisible disease or disability.

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10 Ways to Support Someone with an Invisible Illness

Someone you love dearly has an invisible illness, and it can be difficult to know how to support them.  Their illness can be confusing, they do not look sick, they do not always have answers to their problems, seem to have endless appointments and procedures, and it can be hard to know how you can help.  Some days they feel great and lead a "typical" life,  their instagram is filled with smiling pictures and quotes about overcoming struggles so you may even think they are "cured."  The funny thing is about invisible illness, is that most of these disease people will have to deal with for their lifetime.  They learn how to manage the symptoms, they can have surgery to correct things, they have good days, but it may be something they may to contend with for a lifetime.  

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