Advocating for Yourself Daily is Exhausting!

The thing about life with chronic illness, especially one as progressed and serious as what I face with mitochondrial disease, is that you are on-call everyday, NEVER a single day off from being a chronic illness advocate… a job you likely had never wanted. It is not only the standard situations you think of like needing to advocate for yourself during that ER trip, or when seeing a new doctor or nurse, physical therapist… it is having to explain to the dentist you can’t lay back as far as typical patients, and your heart condition can’t tolerate the standard numbing agent… it is needing to advocate with your apartment complex that your illness won’t allow you exposure to the chemicals in their “mandatory pest control sprays”, it is advocating to your psychotherapist that no, you are not dealing with agoraphobia, you truly just do not have enough energy/health stability to leave your house safely… it is explaining to your neighbor why you sometimes can walk, and sometimes use a power wheelchair… it is advocating to your family and friends that you can’t do the things you used to do, and no, you can’t eat that food any longer, or that food, or that one either… it is advocating daily in your relationship with your spouse/partner and or children, to navigate the delicate challenges which come with being a partner who physically CAN’T equally share in the running's of the home, the dishes, laundry, groceries, shopping, cooking etc. etc. etc… being sure that you are always advocating for what you can and can’t do to protect your health while trying to be certain your partner doesn’t become resentful or burn-out… it is advocating to your children that you can’t go outside and play that game you used to even though it breaks your heart, and no you can’t drive them to their friends house tonight as you fight off another migraine….

Chronic Illness is a full time job of not only managing the pain/symptoms, appointments, medications, supplements, it is also full time advocacy and that is more exhausting at times than ALL the rest!