It is a hard job; it is 24/7 with no vacations or holidays; it’s a job no one ever wanted and the pay is horrible! However, if you live with a chronic rare disease as i do becoming your own patient advocate is a job you MUST do everyday!
For many years, I approached dealing with my illness by putting in effort to just appear as normal as possible when I was interacting with others. I tried desperately to not bring attention to my condition, to not show my perceived ‘weaknesses’ to others in the public sphere. Only when at home alone, or with family would I put my body and special needs for life first and advocate for what I needed to be healthy and happy.
Overtime, it became obvious that this coping strategy was not working, and I was only causing myself additional stress, pain, exacerbation of symptoms, and unhappiness. Finally, a light bulb went off in me and I realized there was no way to avoid it, I would now need to be a patient advocate for myself for the rest of my life, and not online in the social media sphere, or within the medical community, but through every day and all the walks of my life because my body needed me to always pout it first, everyday, in every situation.
I still have moments where I want to revert back to my old ways, and to just try to hide, or be quiet, and neglect advocating for what I know I need to not be ‘difficult’ or to not draw attention to my situation. It is not easy, no, it is in fact one of the most challenging things I have ever done in my life. However, now that i wake up every morning and stick to my commitment that I will put my health needs first no matter what the situation of the day I find myself in, my body has been thriving better than it has for years, my friends and family are stepping forward and being more supportive emotionally and physically than ever before, and I have greatly reduced my daily stress-load as well as live with a much more centered, balanced, happy mindset each day.
Remember, there is nothing ‘wrong’ with you, or your body, or your life; your life just is what it is, and it is okay exactly what it is. Do your best to find peace in that each day.
