The Good Days Don't Make You A Fraud

Living with an invisible illness can be very difficult. Not only are we struggling with chronic pain, lack of energy, and a host of other difficulties, but because our illness is not obvious to those around us, people tend to not believe us when we tell them how much pain we are in. I don’t know about you, but I hesitate to tell people about my endometriosis, because they usually just don’t get it.

Endo pain can happen at any time

Most people still think that endometriosis = painful periods. So when we cancel plans with friends or family for the umpteenth time because of exhaustion (a very common symptom of endometriosis) or pelvic pain outside of our period, we’re often met by a less than sympathetic response. It’s then up to us to educate people that endometriosis affects us every day, not just when it’s our period.

Some days are better than others

People to assume that chronic illness means that you are always ill. While it’s true that with endometriosis we tend to be in pain most days, and that exhaustion makes us want to sleep most of the time, we do have good days. And sometimes it is hard to enjoy those good days. It feels almost as if we’re not a real chronic illness sufferer if we enjoy some good days as well.

People aren't always sympathetic

Because endometriosis is an invisible illness, it’s not immediately apparent when we have good days and bad days. I tend to find that, since I almost always cancel plans, my friends and family now assume I can’t come to parties or events that require lots of energy. If I do accept an invitation, because my pain and/or energy levels allow it, the reaction is not always a joyful one. Rather than them saying “Oh, how lovely you can join!”, their reaction usually is more skeptical. As if to say, “Oh, so you can make time for this occasion, but not the other ones?”

It's easy to feel like a fraud

Reactions like these can make you feel like a fraud. Given the number of times doctors tell endometriosis sufferers that the pain is "all in their head", and the length of time it takes to get a diagnosis, it’s easy to believe that the pain you feel isn’t real. An endometriosis diagnosis validates the pain and exhaustion, but years of gaslighting does not go away that easily. And when it’s friends or family that openly doubt your pain, it’s easy to feel like a fraud.

My truth

A spike in energy does not make you a fraud, though. Being chronically ill does not mean you can’t ever have fun. At the very least, our friends and family should rejoice with us that we have good days, especially when they are so few and far between. If they don’t, that’s up to them, not you. You’re not a fraud. Endometriosis is real, and devastating, so if there is even one day when you don’t fell completely awful, you have every right to celebrate it. Embrace the good days, because, believe me, the bad days are just around the corner.