One of my old housemates used to make fun of how I talk of my body as a third person; someone I have no control over. It wasn't until she unwillingly and unknowingly fell asleep one day that she came to understand what it is I mean when I speak of my body as having a mind of its own. But that's how it is when you have an Autoimmune Disease.
You may have noticed that I did not upload a post yesterday. Well, I have decided to share the real reason why.
You see, it wasn’t due to a lack of ideas or drive. It was because though I tried my best, I couldn’t think. I couldn’t concentrate, I couldn’t focus.
The pain was too great.
Imagine going to war with yourself. You against one hundred other copies of you, fighting a never ending battle where neither side can get the upper hand. And there’s nothing you can do but treat the wounded and send in reinforcements. Ridiculous right? Well that’s what its like for people with an autoimmune disease. The immune system mistakes a particular tissue or structure in the body for a dangerous invader, such as a virus or bacteria. “The result is a misguided attack on your own body,” writes the American Office on Women’s Health, which can affect any number of the body’s functions. And with more than 80 different known types of autoimmune disease – plus numerous conditions that share similar markers – it can leave many sufferers undiagnosed and in the dark to cope with their pain alone.
An autoimmune disease can take years of trial and error to diagnose. In most cases, there is no single test a doctor can order to confirm a diagnosis; rather, tests either suggest one diagnosis or rule out others. It’s not uncommon for someone with an autoimmune disease to receive another diagnosis first, or to be told that his or her symptoms are just due to stress. That is how it has been for me and even after years of doctors appointments and personal research, I can’t be certain of what I have.
I do know that I have markers in my blood for Lupus and I do have a number of common symptoms that align. Lupus is a chronic condition that results from a malfunctioning immune system. The immune system mistakenly attacks healthy tissue – including the skin, joints, kidneys and lining of the heart and lungs – causing ongoing inflammation and pain. Lupus can sit dormant within the body for years and can sometimes never develop.
But then I also have a lot of the symptoms associated with Fibromyalgia, which is not actually categorised as an autoimmune disease. Fibromyalgia is a condition in which people experience symptoms that include widespread pain and tenderness in the body, often accompanied by fatigue and problems with memory and concentration.
I could have a number of the other conditions known as an autoimmune disease.
And this confusion is very common. This is how it is for most people suffering with an autoimmune disease or chronic pain. There are far too many possibilities and no way of ever being certain because while you may display a number of symptoms associated with one type of disorder, you wont display them all. And sadly doctors are just as clueless and can be hesitant to diagnose a patient because of it.
And what is even more sad is that most of us hide our pain. We pop a pill and get on with our day because it’s not like we have a name for what we are experiencing. And even if we do, hardly anyone understands. Without meaning to, even loved ones can add emotional stress to the physical symptoms of the disease, making it feel like we have to soldier on alone. Sadly too many assumptions are made; that you’re on a fad diet, that you’re making a fuss because you want attention, or that your disease simply isn’t a big deal.
I know of far too many people suffering from chronic illness and pain that are clueless as to what to do to win the war. And because of this I though I would share with you what my experience has been like.
I live in pain. It is constant and relentless. And I do not remember a time when I felt otherwise. Some days are better than others. Some days I am completely fine but other days are really bad.
I speak of my body as if it has a mind of its own because that is what it feels like. I might feel amazing emotionally, but my body will think otherwise. My body burns its energy quickly, so I become sore and tired very easily. I am light and noise sensitive and so I often get headaches. I have terrible blood circulation so my body cannot regulate temperature. My muscles ache and joints often strain, no matter if I’m in shape. My stomach is never happy with me, no matter what I eat. I constantly feel dehydrated. My body doesn’t absorb the nutrients it needs from the food I eat, so it never has enough of what it needs. I get dizzy and nauseous. I struggle to sit in chairs for more than an hour or so. I can’t carry much weight because before long something pulls in my back. I get foggy, I lose interest and forget things. I get sick easily and often suffer more severely. I have learned how to manage the pain but it has taken me a long time and every episode brings something new to the table. I have been accused of lying before. I have been accused of having an eating disorder because I ate so little. And a lot of the time people don’t believe me or understand.
And in 2017 it shouldn’t be that way. When we go to our doctor we shouldn’t be dismissed as stressed or depressed, premenstrual or crazy. We should be heard and more should be done to treat our symptoms than them prescribing some pain killers or sleeping pills. Or even worst, asked a millions questions about our sex life.
And actually you know what? I’m not going to apologise for complaining. When you’re in pain you should speak up. There is something wrong and pain is our bodies way of expressing it. So make a fuss. You shouldn’t have to suffer alone.
And if you do feel alone, please know that I get it. I believe you and I support you. If anyone wants to talk about chronic pain and illness, just hit me up. I’m here for you Difference Makers. But more importantly, let’s be there for each other, for everyone, no matter their problem.