“But you don’t look sick”. How many times have you heard that? Sometimes by complete strangers but more disturbingly by those closest to you – family and close friends.
After receiving a diagnosis of any type of autoimmune disease one of the first things we have to do is come to terms with the fact that we can no longer fall into the ‘what you see is what you get’ category. We have morphed into some whole other being. We now carry with us a handy dandy bundle of conditions that are not visible to the untrained eye, just in case having some nasty disease that will be our constant for the rest our our lives wasn’t enough.
Lets see…fatigue, that’s a great one, you wake up tired and you go to bed tired and, yep you guessed it, you’re tired all the time in between, and I don’t just mean tired like “let me sit for five minutes and recharge” I mean “If I don’t stop and sit/lie down NOW I am going to fall over ‘cos I don’t have the energy to hold up my own bodyweight”; joint pain, don’t even get me started on the fact that there are days (for no apparent reason) when you wake up feeling a searing pain in some or other joint – as if to prove a point I currently have an excruciating pain in my knee that I know will, at some point today, disappear as suddenly as it appeared; hair loss, handfuls of it! Everybody’s hair falls out I hear you cry but believe me it is not normal to lose so much hair that you feel like you could stuff a cushion. And it is terrifying – I don’t want to be bald, or have the fluffy down hair that I had two years ago when so much of my hair fell out; dry eyes, itchy eyes, burning eyes, watering eyes, blurred vision… the struggle with this is that you never know which one it will be, one day your vision is great and the next you cannot focus on the book you are reading or sometimes your eyes itch and burn so much that you want to tear them from their sockets; stomach upsets – you can eat the same thing, follow all the dietary advice to omit this and add that and yet, again for what seems like no good reason, one day you’ll be happily eating your meal and your stomach will just go into spasms and that’s it, you better find the bathroom as quickly as you can! Oh and let’s not forget mood swings! You know Jeckyll and Hyde I am sure…need I say more? I was not a moody person before Graves, I have always had a temper but I was never moody so swinging between joy, tears, frustration and fury in a day can be pretty exhausting. I could continue but I am hoping that you get the picture…
So, next time I have to cancel at the last minute because I cannot physically get off the sofa (for whatever reason) or I am struggling not to cry at the drop of a hat please, please please don’t judge me quite so harshly. Try to understand that late nights are a killer and I save them for special occasions (very special occasions!); I do understand that pre-Graves I was a late night fun loving, life and soul of the party type of gal, and I still am but mostly just in my head now because to be that person now would do me so much more harm than good. I am still me but I do other things now, lunches over dinners, sundowners over late night drinks, walks in the park over hours of shopping in the mall. I don’t drink alcohol much any more because it hurts too much the next day, and the day after that. So, when I say I can’t go to a fancy restaurant or out drinking please do not tell me to “have a night off and get back on the wagon tomorrow”. It doesn’t work like that for me I have to make choices that support my wellbeing.
It has taken me a long time to understand my own condition and what it has done to, and continues to do to, my body and I don’t expect anyone to fully comprehend what I go through but I would love it if people could just embrace who I am now and not expect me to be who I used to be – I am not and I cannot be that person. I am trying to be kind to my self and I ask that you do too.