What Does 'Living With a Chronic Illness' Really Mean?

What does the term “chronic illness” really mean? What is the difference between a chronic and terminal illness? I often feel the term in itself is not quite understood.

Simply put, it is a permanent illness that might not kill you in the foreseeable future, but is something you will have to live with for the rest of your life. Like having the flu until the day you die. There is no cure at present; all you can do is try controlling the symptoms with an experimental cocktail of treatments.

Although many chronic patients manage to live their lives out thanks to advances in medicine, a large percentage do not survive, either. In fact, according to the World Health Organization, chronic diseases are the leading cause of death in the world at 60 percent of all deaths.

Mind you, I am not diminishing the severity of other causes of death, but I am asking why is the leading cause of death in the world not given the attention it needs? Do we simply get used to the idea, because many chronic patients do not look sick enough or die fast enough to trigger an empathetic response?

What it means to live with a chronic illness is that the hospital becomes your second home, no matter where you are in the world. It means doctor appointments will be a definite part of your schedule, indefinitely. You learn to bring your own pillow for long-haul hospital stays.

Clinical tests become part of the normal routine — having an X-ray taken starts to feel no different from a snap on your camera phone. Having blood drawn from your veins becomes just another task to strike off the list, like getting your groceries done.

There is no such thing as “private” parts. You get used to being examined by doctors and nurses. You learn how to suck it up and make it hurt less.

What it means to have a chronic illness is that it’s part of your DNA, and while modifications to your diet, lifestyle or environment can make a difference with the maintenance of the disease, they will never eradicate what’s part of you.

Sometimes the only thing medications can try putting out are the symptoms. Extinguishing that fire might stop the whole house from burning down, but that does not mean it leaves no damage of its own to an already broken home.

It means many of us don’t have money set aside for rainy days, because rainy weather is the year-round climate in our world. Even if it isn’t a raging thunderstorm, there is always a light drizzle now and then.

To live with a chronic illness often means the pain is confined to the inside of your body. It starts to fester under the skin where nobody can see, and by the time it does rise up to touch your physical features such that you qualify as “looking sick,” it has often climaxed to a life-threatening situation.

While it is possible to go into remission — downtime when the illness is well-behaved — it does not mean you have been cured or these mutated cells are dead. They are just taking a nap, and the longer they do so, the better.

Follow this journey on A Chronic Voice.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.