There are a number of different conditions that are called invisible. There might not be obvious symptoms, but they are very real. When someone says they have an autoimmune disease most of us automatically look for obvious things that can be spotted straight away. Those aren’t always there. Or they might not seem that bad. I was diagnosed with an autoimmune disease a year ago. And even when I was trying to figure out what was going wrong with me, people quite often told me that I didn’t look sick… Even though I was.
For about two years I was struggling with constant joint pain, fatigue, anxiety and extreme mood swings. Not the usual symptoms for Coeliac disease, so it took years to get diagnosed. We tried treating every symptom separately but it didn’t work. Then when we looked at them as a group of symptoms, caused by one single issue, we figured it out. And it all made sense, sort of… When I say we, I mean a group of different specialists and me. I say sort of because I didn’t have the gastrointestinal problems Coeliac disease usually causes. A blood test and biopsy later, the verdict was in: I have an autoimmune disease that has no cure. The one and only “treatment” for CD is a 100% gluten free diet. That means avoiding cross contamination and the tiniest bit of gluten.
It sounds easy, but it isn’t always that simple. Put it this way: my immune system was in overdrive for at least two years as I was constantly exposed to gluten. I tried whatever I could think of: eating really healthy, trying to get as much sleep as possible (and trying my best to get quality sleep), take all the supplements I needed, get regular exercise, even if I was constantly tired. These two years took their toll and even though I was gluten free for a year, some of my symptoms are still lingering and accidentally eating gluten makes them worse. No matter how careful I am, accidents do happen and that means the overall healing process is slowed down too…
Before being diagnosed sometimes people thought I’m making it all up. I was 22-23 when it all started. I’ve always been an active and outdoorsy person. Then it started to change. I was always tired and I started cancelling plans, I stopped doing a few things I used to love. It also affected my work. I forgot things and completing tasks took much longer than it used to. And that affected other people too, wether they had to work harder to make up for me doing less work or having to correct my mistakes. It all looked like I just can’t be bothered to do anything properly.
Here is what it looked like from my perspective: despite the constant pain, I got out of bed (almost) every day. I tried to still do some of the things I used to, so I went climbing as often as I could face it. And despite constantly feeling like I just want to stay in bed and hide from the world, I still did my best to see friends and spend time with people. But explaining how I feel was difficult. I didn’t know what’s causing it, so constantly saying I have no idea why, but I feel absolutely brain-dead sounded like a made up excuse after a while. Also, not many people know how exhausting living with almost constant pain can be. After a while it’s not just the pain itself but the worrying that comes with it. What is causing it? What am I doing wrong? What more can I do to just feel normal?!
One year on and some days are still a battle. Because it took so long for me to get diagnosed, it will take a while for all the damage to heal… It took me some time to accept that just because I know what the source of my problems is and I’m doing everything I can, it will take a while to feel normal again.
If I eat gluten I spend the next two days in bed. It really weakens my body and that means other problems will follow. Again, it can seem like a made up excuse, it’s so easy to say “I must have eaten something…” but it actually isn’t. Sometimes I don’t want to say anything and just get on with it but when I’m struggling to get out of bed and walking to the nearest shop, which is two minutes away, is challenging then going to work and facing the world actually feels scary. And this is the thing: if I had visible symptoms no one would question my illness. But because I seem fine I have to keep explaining it all.
Since being diagnosed I heard it all:
- now that I’ve been gluten free for so long, I should be perfectly fine – in an ideal world, yes, and I’d love to be perfectly fine. As I already said, some things take longer to improve and being accidentally glutened a number of times will slow this down.
- my symptoms are not that bad after all – they are. I’m 25 and sometimes I struggle to get out of bed. Going to work can be a challenge because I feel absolutely brain-dead. It’s not that serious, right? At my age, I should not feel like this, especially not for extended periods. But I do. And it sucks.
- Surely a little bit of gluten won’t hurt / cross contamination can’t seriously cause severe problems – if a passenger on a plane has a peanut allergy, they’ll ban peanuts on the flight, so yes, cross contamination can be that bad. I might not have an anaphylactic reaction but it will make me ill.
- this whole gluten thing is new and it’s because of all the stuff we put on the wheat – it’s not new, it has nothing to do with pesticides. It was first described in ancient Greece, there were no pesticides, there was no GMO, but there was Coeliac disease.
Living with CD certainly isn’t the end of the world and there are a good few other conditions that are far worse than this one. It is a constant thing though and knowing there is no cure and treatment is daunting enough without having to constantly explain and try to make people understand: an autoimmune disease is an autoimmune disease even if you don’t think it’s serious. It’s a medical condition, diagnosed by medical professionals and you don’t have the right to make it sound like a bad joke.