When you are chronically ill, you are forced to fight battles you did not choose. The battles never end; you are fighting illness 24/7 and it is tiring, messy work. It can affect all areas of your life, wreaking havoc with your relationships, employment, education, finances, social life and so on… it can tip your entire world upside down. And it doesn’t just affect you; it also affects the lives of everyone around you.
If you are lucky to not have a chronic illness, I cannot expect you to understand what I am going through. I could ask you to step into my shoes, but you cannot truly understand what I am going through unless you are me. All I can do is try to help you understand what I am dealing with. Here are some things that I want you to understand about my chronic illness:
1. I may look well, but I’m not.
Do not be fooled by my appearance. I may look well, but beneath the surface is a world of pain and fatigue. If I say that I am tired, then I really am tired. I am not malingering, or lazy, or imagining my pain. If only I could show you what goes on beneath the surface, you would be horrified by what you would see. I may often be in constant pain, the sort of pain that meds cannot numb.
If you become chronically ill, you may lose your mobility, or become disabled. Sometimes, there is visible evidence, such as mobility aids, prosthetic limbs, or scars; these are the battle wounds that can be seen, that people believe. But when the battle goes on beneath the skin or within the mind, the battle wounds cannot be seen. No-one can see that my body is on a self-destruct mission, or that my mind hurts. They cannot see my wounds and people will not believe in battle wounds they cannot see. Did you know that 96 percent of chronic illnesses are invisible?
2. Just because I have a good day, it doesn’t mean that I’m better.
It just means that I’m having a good day. Tomorrow may be different. My illness is unpredictable and I have no control over it. Often, I am unable to attend family and social events
3. I hate the loss of my independence.
Having a chronic illness can leave you housebound and dependent on other people. Being ill has taken away much of my independence and at times I feel like a prisoner in my own home. You may lose your income and are not able to support yourself; you may be unable to look after yourself and it may become a struggle to maintain your dignity. It is difficult to explain these things to other people, to medics, to your loved ones and to those who take care of you. I feel like a burden, an inconvenience that must be dutifully dealt with; a chore. I take, take and take, just to stay alive, but I’m unable to give much back in return.
4. I feel guilty all the time because I feel like a burden.
I require a lot of help and attention, which may interfere with your own life, with your work/studies, friendships, your social life and so on. You may spend half your life taking me to medical appointments and running around after me because I can barely look after myself. I am sorry that living with my illness causes you so much stress and interferes with your life. Sometimes, I feel like I’m being blamed for my illness. Psychology Today writes that “adults who tended to blame themselves for their chronic illnesses did more poorly because self-blame is not only demoralizing but it also creates significant internal stress which…[causes] further declines in health which then lead to more self-blame.”
5. Life with chronic illness is lonely.
You may struggle with isolation and loneliness, even when you are surrounded by people. You cannot relate to them, they cannot relate to you. And even when you are being cared for and have people around you, you often feel alone and you feel that no-one understands your pain. Humans are social animals, we rely on each other to stay alive. My chronic illnesses has cost me many friends and loved ones. I have no social life because I am mainly housebound, and sick friends aren’t much fun. It is during your worst times that you learn who your real friends and loved ones are.
6. Being chronically ill affects my state of mind.
Just like invisible physical illnesses, mental pain is unseen.
People usually tell me to:
“Pull yourself together.”
“Just snap out of it. Get over yourself.
“You’re just being awkward.
You just want attention.”
But they do not live with the constant terror of anxiety, or the numbness of depression. Being alone, isolated, stressed, anxious and depressed from dealing with your chronic illness can wear you down. We are chronically misunderstood by society, friends, family, and even healthcare professionals. We are often housebound, and so we can feel isolated and trapped. Dealing with all this is frustrating and exhausting, especially on top of the physical problems we contend with.
7. I am still me.
I know that at times my illnesses seem to consume me, but it doesn’t mean that it has killed the person I am inside. I am still there. I am still me and always will be. Beneath the layers of physical and mental stress, I am still there. If I slip beneath the waves, look for me, because I am still there. Despite the changes and years that have passed since I became chronically ill, I am still here and I am still me. We all have many challenges in life, ill or not; chronic illness just happens to be one of my many challenges. My chronic illness is a glove I am forced to wear, but just like the many other items of clothing I own, it is not a part of me – it’s just something I wear.
8. I know that you struggle too.
You think that I do not see it, but I do. You think that I cannot hear you, but I am. I am acutely aware of your struggles and it is unbearable, knowing that you are struggling from my illnesses too. I see how it tires you out and takes up most of your time, I see how it stresses you out and threatens to overwhelm you. You deserve to be cared for too. So I feel powerless watching you struggle and not being able to do anything about it.
Please do not think that it’s all about me. It’s about us and how we fight this together.
If you are fighting this battle with me, by my side, please know that I am grateful for you sticking by me and caring for me. It means more to me than you could ever know.