by Felixia Valerius, MA
What did you think about when you woke up this morning?
Maybe it was the meeting you needed to get to by 8 am. Maybe you still needed to pack a lunch for your child, or make sure to make that haircut appointment for Wednesday. Maybe it was the laundry you hadn’t folded yet or your dinner plans. Tonight you will probably be exhausted after everything is checked off of your list, and like most Americans you will probably need your coffee in the morning to do it all over again tomorrow.
Now, what would happen if I asked you to think about all of the “little” things that you do on a daily basis as well?
You do many of them. For example: brushing your teeth, showering, putting your shoes on, going to the bathroom, etc. What if every day your morning started with a list that included every single motion that a human does and conscious decisions about which things you could physically do? For people with chronic illnesses and/or disabilities, having to choose a fraction of life’s daily duties to accomplish, no matter how much is on the list, is a very real reality.
Most of us have an idea of what someone with a disability or chronic illness looks like. We’ve seen people in wheelchairs, most of us have visited a hospital, and have held a door for someone who looked like they needed help doing so. Many people, even some in my circle, would be shocked to know that I personally deal with a chronic illness. Why? Because I “don’t look sick.” In fact, most people would guess that I am very healthy by looking at me.
I have an invisible illness. There are millions of other people who have one too, and you may be surprised at how many of them you know personally. Every day when a person with an invisible illness gets out of bed (if they do get out of bed) they might be in pain, and they are restricted in many ways when it comes to performing activities that most of their friends do not even remember that they do. They might take medications that give them unpleasant side effects, and they may even be terrified about their future.
The majority of people who deal with a chronic health issue experience a mix of the above and more. However when a person’s illness or disability is invisible, one major hurdle is not looking sick or disabled in a society where productivity is expected if you are able bodied.
Many people with invisible illnesses are judged unfairly when they cannot work, they may be judged as lazy or a “whiner,” they may constantly feel as though they need to explain themselves, and many times experience stress in their relationships. Many times, a person with an invisible illness will go through many medical professionals before someone actually believes they are dealing with a legitimate health problem.
Over the past 8 years, I have worked with people who experience different chronic illnesses who have been suffering in silence. In group settings, I have met people dealing with Lupus, Epilepsy, Fibromyalgia, heart conditions, Rheumatoid and Neurological conditions, cancer, digestive diseases, mental illness, and many more.
Many people are surprised to hear that only a small fraction of those who have participated in the many groups I have facilitated over the years have actually “looked sick.” In fact, according to the 2002 Census, approximately 96% of people who live with an illness have an illness that is invisible.
So what can we all do?
- When you see a person who looks healthy park in a handicap spot, or use the designated stall in the bathroom, remember that millions of people who deal with chronic conditions do not show signs of illness externally.
- Talk about it. If you find out your friend or loved one has a chronic illness, it is okay to learn about it. It is okay to ask respectful questions. And when you are talking to them, remember that they are still the same person that they were yesterday. The illness is just one part of their life.
- Know that you cannot fix their illness and you are not their doctor. Most people with chronic illnesses already have a medical team and care plan. It is nice to just hear at times from loved ones: “Wow, that stinks!” “Always here for you!” “You’re doing awesome and I love you no matter what.”
- Do your best to remember that your friend with an invisible illness…in fact has an illness. They may not be able to go on that road trip with you, or have that drink with you at the bar.
- Do not compare them to your “sister’s boyfriend’s cousin” who had the “same” illness. They are on their own journey, and all illnesses affect people in different ways.
- Educate yourself on their condition and read The Spoon Theory by Christine Miserandino (link below)!
- Have their back, and recognize their “small” accomplishments. They might in fact be big.
For those with any chronic illness, The Spoon Theory by Christine Miserandino is a great place to start when attempting to have the difficult conversations with your loved ones on what it is like to live with a chronic condition: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Cashman Center (Burnsville) offers a therapy group for those with chronic illnesses/disabilities. Please call 952-715-6451 for more information.
