“The Invisible” Awareness Week 2017
This week marked the 2017 Invisible Illness and Disability Awareness Week. It is a week that gives a voice to those who often times are not given a voice. What are invisible illnesses, you may ask? An invisible illness or disability is a disease or condition that impacts an individual’s life and overall health, all while being invisible to the public eye. This means anyone could be fighting for their life, but appear normal. Some examples of invisible illnesses are Cystic Fibrosis, Congenital Heart Defects, Chron’s Disease, and countless others. I personally have battled invisible illnesses and disabilities for an extensive time. When I am not hooked up to my central line, tubes, drains, or using my walker, I appear to be a normal 18 year old. In my moments of rare freedom I look like a healthy individual. However, inside of my body is a war. As you peel back the layers you discover the body that is hanging on only due to the discoveries of modern medicine.
I am built entirely of faulty collagen that is loose and tears far too easily. This is due to my genetic mutation of Ehlers Danlos Syndrome. I have intestinal failure that has left me living off of artificial nutrition that is fed through my veins. I have a diaphragm that functions so minimally, it has left me with build ups of carbon gas. I have an autonomic nervous system that does not even know how to function anymore. Even my physical features are masks of illnesses. It appears sometimes I have rosy cheeks, but in reality that is my sign of being hypertensive or of having a mast cell attack. My pale or “porcelain” skin is due to poor circulation and issues with oxygen. My distended belly has been questioned before as a “food baby”, but in reality it is the result of organs being stretched and diseased. My “cute plump” or “chubby” cheeks and face are a result of chronic steroid dependence due to a combination of adrenal insufficiency and other diseases. In order to keep fighting, I had to say goodbye to my slim face years ago, and traded it in for a face that carries the fluid weight constantly. Even though my body is changed and taken over by illness, I am still grateful for it. Without this body I would not be able to live the beautiful life I have.
With invisible illnesses it is easy to think a few of these commonly spoken phrases:
- “But you look so good!”
- “You look so healthy”
- “I am so glad you are out of the hospital, that must mean you are better”
- “You must be feeling great, because you look amazing”
These phrases are all spoken with intentions of being caring, even though they are not accurate. Invisible illnesses and disabilities are very deceiving and often portray a completely different picture than what the patient is feeling. Patients with these chronic conditions are still sick when they are not in the hospital. For example, I am currently out of the hospital, but doing the same medical regime as when I was inpatient and still am in the same fragile state of health. I simply chose to try and attend school and be at home, instead of waiting in the hospital. My own personal struggle has taught me to be more tolerant and loving towards others. It has allowed the lesson of kindness to become the most important lesson. As awareness is spread and people learn about these realities, they often ask what they can say to be more appreciative of invisible illnesses and disabilities.
The best gestures you can give to these patients and their caregivers are simply are gestures to apply to everyone you meet:
- Treat everyone with kindness, you never know what someone is enduring behind closed curtains.
- Be supportive to everyone.
- Remind your loved ones you support them, sometimes a bit of encouragement is what someones needs to hear on a day they are silently struggling.
- Send text messages and leave voice mails even if someone does not respond. They are most likely busy taking care of their medical cares, but when they see those texts or hear the voice mails, their spirits will be lifted. Even if someone does not respond, that does not mean they are not touched by your love.
- Do not question our symptoms, we know our bodies best. Instead, ask how you can support people on hard days.
When it comes down to the core values, kindness resonates as the most important. Yes people battle these invisible diseases, but we mustn’t let them define who they are. It is kindness that should define everything. To treat everyone with kindness is the key to finding joy in life. Invisible illnesses and disabilities can be isolating and challenging, but with a bit of kindness, they can be turned into a fight for better days.
Thank you for helping “The Invisible” raise awareness,