“But you don’t look ill!” Anyone who suffers from an invisible illness has probably heard this phrase at least once. Its true, most of the time I look absolutely fine. I try to stay positive, to carry on with life. What choice do I have? I have 5 beautiful children, a husband, a house and a business to run. I cover well. So well that I think even those close to me forget sometimes. But inside, most days, I’m suffering.
I have PostCholecystectomy syndrome. You’ve probably never heard of it. Thats okay, not many people have. Most people who have their gallbladder removed feel relief from their symptoms and an end to their pain. Not me (and 5-40% of other people). Two weeks after my operation I started to feel nauseous. Not just a little bit. It was constant, worse after I ate, worse if I went too long without eating. I was still getting pain too. I saw the GP, was referred to a Gastro specialist. But he treated me like it was all in my head. I was given anti-sickness tablets, which helped a bit, but didn’t take away the symptoms completely. I had investigations, was found to have bile reflux and gastritis too. I was put on more medications. I saw a new Dr, who finally diagnosed me with PCS. 2 years after my operation, I finally had an answer. But also a life sentence. I was told that as my condition had carried on for so long it is unlikely to ever go away.
My medication controls it, for the most part. I have good and bad days. But I smile, and I carry on. On a bad day I am so so tired. It is debilitating fighting this battle on the inside. On a bad day I struggle to look at my phone screen or my computer without feeling incredibly sleepy. So I may be a little slow at replying to messages, or take a little longer with editing. If I’m shooting you won’t know any different. Like I said, I hide it well. Day to day I get by. But if I get a cold, if I have my period or pick up some other illness, thats when I struggle. My body is already fighting every day. Hit it with something extra and it really knocks me off my feet.
“Its just a cold”. Except it isn’t. Its everything I deal with day after day. Everything I struggle through. And then the cold is the final straw. It can take me out of action for days.
I know, its hard to understand. I didn’t get it either. Until it was my life. One thing I’ve learned from all this, is that you can never know what someone is dealing with on the inside. So its important to be kind, be compassionate. Be understanding.
Me, I try not to complain. I’m not writing this because I want pity, or special treatment. I just thought it was important to be open. My illness doesn’t mean I won’t provide you with an excellent experience. My business, my clients, mean the world to me. I will always give you 100% of what I have to give.
And to all those people who suffer behind your smiles. I see you.
If anyone else is suffering symptoms after gallbladder removal, here are some resources that might help:
NHS information on complications of gallbladder removal
Facebook bile reflux support group
Don’t let anyone tell you it doesn’t exist. Fight for your diagnosis. You’ve got this.