Uncomfortable. I've seen that look before. You know the one. Someone asks you an innocuous question. You give them the real answer and then you see their eyes dart to the side. They can't look you in the eye. Their weight starts shifting and they start to look for a way out of the conversation. This has happened to me many times over the past few years and to tell you the truth, I don't even have to give intimate details to make someone uncomfortable. All I have to say is “my teen is chronically ill.”
Chronic illness. People don't know what to do with that information especially if they are blessed to live in a family where everyone is totally healthy. The topic makes people uncomfortable and for that reason, many people that suffer from invisible illness wind up keeping their health issues private. When you add the fear of discrimination at school and work to the mix, it almost encourages anyone that is “different” to keep everything on the down low for fear that they may be treated poorly (and yes, this happens).
The sad thing is, by not talking about issues surrounding illness, we're doing a disservice to all the people out there with perfectly healthy families because sadly, things happen. People wind up with cancer. Accidents happen. We all age and start to fall apart and most of us will be taking care of our parents, many who will suffer from dementia. Those of us who live with invisible illness every day will be better equipped emotionally to deal with whatever life throws at us. That's fact.
Sadly, we live in a society where so many things make us uncomfortable, that we don't talk about topics that are important. Cancer makes us uncomfortable, even though it's something you can't catch. Invisible illnesses make people unsteady because they don't understand how someone can look great one day and not be able to get out of bed the next. There's still stigma surrounding mental health issues, yet we're surrounded by young people in our community taking their lives. All of these are important topics that we need to discuss so we can bring awareness and help others.
My heroes are the ones that make people feel uncomfortable.
This past year, I watched a friend battle breast cancer at a young age and be open and honest about the emotional and physical struggle. She created a Facebook group so she could discuss her treatment plans and get the support she needed from other survivors. She also was able to complain in a safe space and talk about how the disease sucks and how much it's impacted her marriage and her little girls' lives. She took the opportunity to quite possibly change the world around her.
I just saw a childhood friend who's been suffering for years from a host of painful conditions get so angry at unsolicited advice declare war on invisible illness and mental health issues. For years, she's been uncomfortable discussing all the challenges she's had and people's ignorance has her frustrated. So, she's taking time to be real with her Facebook friends and attempt to educate them. Bravo.
However, my real hero is my teen. She's not uncomfortable talking about what it's like to suffer from a number of rare diseases. She's open and honest and will discuss hospital stays, pic lines, feeding tubes and weekly IV's. She's not afraid to post the bad days on her social media when she needs a little boost and shares the great days and all the successes. She not only paints an accurate picture of what it's like to be sick, she brings awareness to other illnesses as well. It takes a special kind of person to put herself out there and care about others.
Personally, when someone asks me what's going on, I don't care if I make them uncomfortable.
The reality of life is that we need more people out there educating others on the reality of life, warts and all. We need to take the time to educate others so they not only understand what we're going through, they gain compassion and empathy for others. We need to attempt to equip them with knowledge so when they have to deal with adversity, they at least know where to turn when life makes them deal with something uncomfortable.