“Invisible illness” is a phrase I have heard a lot over the course of my varying illnesses. Lyme disease is considered an invisible illness. Chronic fatigue syndrome, fibromyalgia, and so many other illnesses are not visible to the human eye. So many things are invisible. Cancer can be invisible. Diabetes can be invisible. Muscle diseases can be invisible. When I park in the disabled spot and walk into a store and someone looks at me I realize that at that moment these things seem invisible to an onlooker. There were 10 invisible things going on inside of me when I walked into that store. All invisible. Anxiety, fear, stress, exhaustion, pain, muscle spasms, dizziness, high heartrate, muscle weakness, nausea. Those are the 10 I can remember. We WANT these things to be visible sometimes because we want other people to know what we are going through and how courageous we are being at that moment. We want the struggle to be visible because we want it to be as real to others as it is to us. Child abuse is equally invisible. An adult recovering from child abuse is equally invisible. We want those things to be visible sometimes as well. We want people to know that this day is hard and here is why. And we want others to join us in our fight!
I have gone through a few “sign” phases for my scooter. I will put a sign on it that says “Please don’t touch me.” I will, on an angry day, put a sign on that says, “I am not a dog, please do not pat me.” And on a day where I am visibly in my scooter with visible struggles but still feel like people need to know more so they don’t judge me, I will use my sign that says, “ I have a muscle disease and that is why I am in this scooter.” Even in my scooter I have invisible illnesses because they are not displayed on a piece of paper in detail.
But don’t we all have invisible illnesses? And do we want everyone to know EVERYTHING that is going on with us? Do we really want EVERYTHING to be visible? I wish each of us had a little sign that said one little tidbit that you wouldn’t otherwise know. Like, “I was anorexic once.” Or “ I have tics sometimes” or “ I have ADHD”, or “I have OCD and am a hoarder” But people don’t have signs and we have no clue what some of their invisible illnesses are. Shoot I would go as far as to say I wish people had a sign that said, “Having a really bad day,” so that we’d cut them some slack. If we knew would we be more understanding? If we knew everyone else’s “stuff” then would our diagnosis seem less isolating or embarrassing? I think so.
I have chosen to be visible in my blog. I have chosen to be visible in my day to day life. I do not shout out on a daily basis all of my diagnoses but most people around me know what I am going through. My invisible illnesses have been made very clear. When you become visible with your illnesses others think they can have input. It is an open door to comments and I have had my fair share of them. As a woman,I wonder if men get the same questions. Do men with PTSD get blown off or discarded or disregarded or ignored? Are their flashbacks just annoyances and frustrations to those who love them or are they shown compassion and understanding? Do men with anxiety or fibromyalgia get questioned ? I’ve noticed many men can smash things, break things, slam things and they are just “being guys”. Women show an “emotion” and they get torn apart. But what about men with “invisible illnesses”? What happens when they come out with their truth? Are they treated the same as women? Because all I know is how it feels to be a woman and it does not feel good the way that I am treated. So I wonder… do men keep abuse and illness a secret, because men may be able to break things but are not always allowed to feel other emotions. Do men and women both stay invisible because it is safer there?
We don’t get hurt there. We keep a wall up of protection there. It is easier to stay invisible. But I don’t know if it is always healthier! I stayed invisible most of my life. I kept my abuse invisible. I have kept my pain invisible. I have kept experiences invisible. That way no one can judge me. Women and children keep abuse invisible. Little boys and men keep abuse invisible. Because when we become visible we are opening the door to ourselves and unknowingly opening the door to everyone else’s opinion of what we are going through. But we cannot stay invisible just because society cannot accept us. We cannot stay invisible because people we have in our life will not honor us. We have to become visible because we hope that as we are true to ourselves, others that love us will also be true to us too.
We want these invisible illnesses to be known so that they can be validated, be treated, and find cures for them. We want to spread the word, to break the silence, to bring awareness to all things invisible because we want to be saved. We want you to see what we have experienced and we want you to show empathy and not judgment. By choosing this path we make ourselves vulnerable. I have shared my story of abuse, Lyme disease, vulvodynia, multiple chemical sensitivities, muscle disease, PTSD, flashbacks, anxiety, and more. But I question this:
Are invisible illnesses REALLY invisible?
If you look hard enough you can see.
If you choose to look beyond an instant of a glance, you will see.
My Lyme disease isn’t invisible, look at my red knuckles. My PTSD isn’t invisible, look at my stare and freeze. My anxiety is not invisible, it is written all over my face. If you really look at me. If you really look at someone, you can see what they think is invisible, is not invisible at all. You can see the look in their eye, the pain in their step, the rash, the thinning hair, the twinge when opening a door. These diseases are not completely invisible. Other people just choose not to see them.
NOTHING IS INVISIBLE. PEOPLE JUST CHOOSE NOT TO SEE.
Some days I wish I were still invisible. Yesterday, I wish I were invisible. Because being visible feels too raw. Being visible feels like it gives a reason for others to be insensitive. I felt like a nothing for so long. Now I am a something and it doesn’t quite feel like I thought it would today. I thought finally being visible would feel empowering. But when people know your weaknesses it just feels like more of a vulnerability again. Yesterday I feel weak. I wished someone would be my strength. I wished someone would see that even though I am as completely visible as I am able, I still have so much invisible, that is just out of my reach, but causing so much pain.
Do I want to be completely visible? Do I want to be partially invisible? Today I just don’t know. But I wish someone, anyone, thought to just ask.
Invisible illnesses, do we always want to shout them out to the world, or do we some days want to just…be? Be not our illness. Be not our pain. Be not what others want us to be or hope us to be or project us to be. Simply to be. And for that to be OK. And for that to be enough. Today, I just want to be.
Whether illness, pain, or abuse, if you’ve suffered feeling invisible and feeling silenced then you can most likely relate to my current feeling. You know the struggle of having a voice an sharing your truth. You know the varying reactions of others. You know things don’t always end like you planned. And you know that speaking your truth is not always welcomed or embraced. BUT Even in my current state of unrest, I do have some clarity.
When people who are supposed to love you make you feel invisible AGAIN it makes you want to stop. It makes you want to stop all the hard work that you have gone through to become visible again and throw it out the window. It makes you take a step back. There will always be people out there that think or maybe even unintentionally set you back. You can’t let one person, or a group of people, be in control of your progression or regression. They may take a moment away from you but don’t let them undo your hard work.
I put myself out there. I am doing the work. I am visible for the first time in my life. Regardless of my vulnerability, I will continue to move forward. I have come to far not to.
I will never be invisible again.