The Exhaustion of An Invisible Illness

Living with neuromyelitis optica (NMO) for the last 15 years has definitely had its challenges, however, trying to explain how I feel when living with an invisible illness is extremely exhausting.

Most people don’t understand when you have an invisible illness, and don’t take you seriously whenever you’re not feeling well. I’m speaking about my experience and how it has affected me over the years.

NMO pain and fatigue

When I was first diagnosed I didn’t know what to expect but after 3 attacks and being left with residual symptoms, I almost always live in a level 8 of pain and fatigue (which no one can see). I would always make plans to do things with friends and family, but realizing that after many broken plans by me that I was better off not making plans and just going day-by-day with how I feel and being more spontaneous with going out and doing things.

I know I upset many people in my life by always breaking plans at the last minute, and although I couldn’t help it at the time and I would try to explain, most never understood. Why? Because “I don’t look sick.”

They can’t see the pain I’m in and how bad my chronic fatigue can be at times. You see, you can’t see the lesions on my spine and try explaining them, oh boy! I can’t even recall how many times I’ve tried to explain the myelin that gets stripped from my body attacking itself. No, but really sometimes I want to scream, because it just is so exhausting trying to explain an “invisible illness.”

Explaining my NMO

Over the years I have missed many holidays, celebrations and events and had to cancel last minute which led to me disappointing many loved ones, friends and colleagues. I’ve learned the hard way by some of the friction it caused in some of my relationships, but this goes back to others not understanding what it’s like or feels like with an “invisible chronic illness.”

I’ve tried many times explaining “banding” around my waist and when my legs are on fire in pain, however, if someone doesn’t want to try to empathize with how I’m feeling, then I usually know I won’t have the support that I need from that person and have stopped trying to explain. Hence why having an invisible illness can be exhausting if you choose to allow it to be.

NMO exhaustion

I’ve learned to stop saying “yes” when asked to make plans and simply reply “I will have to let you know this day”. Most people in my life now understand it because they choose to learn about NMOSD and how it can appear as an invisible illness.

I now and always will listen to what my body needs first and will continue to live my life to the fullest day-by-day. So at times having an invisible illness can be exhausting because when it comes to explaining how you are feeling, whether it be your doctors gaslighting you or family and friends not understanding, please know you’re not alone. I see you, I hear you and I am with you!

You are not alone. Keep fighting!