Tuesday, August 26, 2014

Educating Yourself for the Love of Your Spoonie

This post is geared towards both those with and without fibro or another chronic invisible illness and is something I can get a little passionate about. I know that many spoonies are in different stages when it comes to the diagnosis and management of their illness(es). I was fortunate enough that Nick had already received his diagnosis and had gone through a few years of trial and error with his meds and management of his fibro before he met me. As you may have read before, he ended up going to the Mayo Clinic in Minnesota, and their knowledge and support made a world of difference for him. He was knowledgeable enough about his illness by the time we started dating that he was able to explain many aspects of it to me, so I could better understand this part of his life. I know that not everyone is in the same boat – some spoonies are just starting to experiment with the right combination of meds, some are struggling with the varying and unpredictable symptoms, and still others are fighting alone with no support or understanding from friends and family.

I certainly don't profess to know everything – in fact, I'm still learning myself – but I'd like to share something that helped me. When Nick first told me about his fibro, I was pretty ignorant (as I have mentioned before). Once I realized that I was interested enough to pursue a relationship with him, I decided that the best way for me to proceed was to be as supportive as possible, no matter how much or how little I understood what he was going through. It was very surprising (and saddening) to me to learn that I was the first person he dated post-diagnosis who actually cared enough to want to know more. Being the type of person who loves to learn, I decided to search on the Internet and ask around on different support groups for book recommendations. Though I haven’t read through them all yet, I purchased a number of books that were suggested to me as a good source of information for both those with and without fibro.

If you have fibro or another chronic invisible condition, please take the time to educate yourself on your illness. I know that everyone's symptoms and experiences are different, but please don't be afraid to ask questions of those who have been there before you. There are no stupid questions when it comes to your health and well-being and trust me, I have heard about some very strange symptoms that can be attributable to fibro. The more you know about your illness, the better equipped you will be to try to explain it to others in your life. Also, please find a support group online or in your area if you aren’t getting enough support at home and know that you are not alone in this.

If you don't have a chronic invisible illness, one of the best things you can do is to educate yourself and be an advocate for your friend or partner who does. There are so many people who are clueless when it comes to these types of illnesses and how they affect those who are dealing with it. If we want to spread awareness, we have to start with ourselves and gather facts so we can effectively share this information with people on the outside. Many spoonies have difficulty focusing on reading due to fibro fog or headaches – offer to read books or articles to them or even just share what you learn. You have to learn to approach the treatment and management of your spoonie's illness as a team – no one should have to go through such a life-altering illness alone. As corny as it sounds, knowledge really IS power in this case.

Peace and Love,
Kim

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