Can you tell from these photos the ones in which I felt sick? Some of them are from the hospital, the car pick-up line, the house, and a few from my favorite thing to do (go to concerts). In some of them, my hair is long. In some others, it's short. My face and body appear rounder in some photos than in others. The answer to the question is: I felt sick in every single one of those photos.
You can see that I have on makeup and my hair is curled, which hides the red face and tired eyes. But, in EVERY single one of those photos, I was sick, even if I was having a relatively good day. I have had someone say to me, “You look so healthy. I'm so glad you're over the sickness.” (Just like someone commented on how far my son Bentley has come and asked whether he still was autistic.)
Autism and cystic fibrosis are genetic and do not have cures. Yes, Bentley has come so far in the past year with his speech and his behavior, but I assure you he is still autistic. Yes, the IV antibiotics got rid of the active infection in my body, but I still have CF.
I know that saying those things may seem like a compliment, but it is not. What I hear is, “Are you sure you have CF and aren't exaggerating?”
One of the worst parts of my illness isn't being sick -- it's the doubt. Everyone has a picture in their mind of what certain illnesses look like and if you don't match that, the automatic assumption is that you must be lying.
Clinically, I am the picture-perfect patient for pancreatic sufficiency. However, for someone not familiar with CF, I am not. Just like autism has a spectrum of symptoms, CF does too. Although one CF patient may be thin but have no sinus or lung issues, another may have sinus and lung problems and be overweight.
Another factor to consider is the amount of steroids we have to take to keep our inflammation down. On top of cystic fibrosis, I have tracheobronchomalacia -- a weakening of the walls of the airway -- and allergic bronchopulmonary aspergillosis. When I get infected sinuses or lung inflammation, steroids are used. When my back pain flares up, steroids are used. When I had my brain surgery for an inner ear problem, steroids were used. All of this steroid use resulted in weight gain. My natural weight is around 140 pounds; however, having to take more than 40 rounds of steroids since 2014 caused me to gain a whopping 100 pounds, and it's almost impossible to lose until the steroids leave my system.
Another issue with being a parent and having a chronic illness is the judgment from people.
“Oh man, I would love to spend three days in a hospital bed relaxing!”
“It must be nice to have your mom come help whenever you are sick.”
“Must be nice to be able to say, 'I don't feel good' and have someone come running to handle your responsibilities.”
And my personal favorite: “I get sick too, but I don't have a choice and have to suck it up and take care of my kids because that's what real moms do -- they take care of their families no matter how they feel. I don't get to run to the doctor every time I'm sick and get admitted to the hospital to escape reality.”
It sounds insane to think someone would say those things, but they have. I have one of the most unsupportive and uncaring families. I can count on one hand how many times my so-called family members have called to check on me.
There are a few things you should NEVER say to someone with chronic illness, invisible or rare illnesses, or chronic pain:
- Never question the severity of their illness or if they're even ill.
- Never compare their illness to something you have had or someone else you know has had.
- Above all else, never make them feel guilty about being sick or imply it's something they did wrong.
Just because you don't see the illness every hour of every day doesn't mean that person isn't sick or in pain.
If a cancer patient has hair, does that mean they don't have cancer? No. If an autistic person is verbal, does that mean they do not have autism? No. Invisible illnesses are just that, invisible. If you can't see the disease/sickness, it isn't because it doesn't exist. It's because that person spends countless hours trying to mask the pain/disability. Whether one uses makeup, a smile, or fancy clothes to mask how they are feeling, or chooses to hide out in their house to escape, their disease is still there.
What can you do for someone who has a chronic, invisible, or rare illness or chronic pain? Be supportive. Do your research. And most of all, be kind to one another.