One of my friends posted a message on Facebook to her loved ones that she was trying to do her best to help others in her life, but that she needed to take some time for herself. She said she hoped they understood.
Almost everyone replied back with messages telling her that if she didn't take care of herself, she would be no good to the folks she was trying to help out and that they understood. One of the people replied to her that "Anyone who doesn't understand this isn't worth keeping around."
That got me thinking about expectations put on us by the people around us and the judgment that we receive when we don't fit into their idea of what we should be capable of doing.
Auto-immune diseases are the type of disease which doesn't necessarily have an outward manifestation. People look at you and visually you may look healthy and well. Many folks with these illnesses will employ the "fake it till you make it" tactic and work hard to look good on the outside when they feel horrible on the inside, as if the mere act of beautifying the shell will make the contents magically heal.
The problem is that styling your hair and putting on makeup doesn't heal a disease in which your immune system attacks healthy cells in your body. However, people assume that you've gotten better or that you're fine.
I have been relatively thin my entire life, but since the activation of my Celiac Disease, I have experienced both weight gain and a loss of muscle. My body was so small before, that the weight gain doesn't make me appear obese, I apparently just look "healthy."
But I don't always feel healthy. On my best days, I'm up to 90% but I've never felt like I did prior to my Celiac Disease being triggered. Some of the people in my life have been understanding about this, or at least compassionate. Others have outwardly expressed their frustration with me. Some people just backed away silently and have removed themselves from my life.
I used to be what others considered to be loads of fun. I would meet up with friends after work for a round of beers and a game of pool or darts. On the weekends, I would go dancing, or throw BBQs. I was a beer pong enthusiast. I would see live bands play at least once a week, sometimes driving for 2 hours each way just to see the show.
Before Celiac, when I got sick - which was rare - I would go home after work and go right to sleep. I'd wake up the next morning healthy as a horse and jump right back into my busy lifestyle. Sometimes it wasn't illness, but just running myself ragged that caused me to have to take catch-up sleep nights.
Now, I cannot always trust it to be cooperative. Cross contamination is something you can't plan for. I never know how I'm going to feel from one minute to the next; let alone one day to the next. Because of my Celiac, I have had to unintentionally back out of plans. Most of the people I used to call friend simply stopped inviting me to things. Why bother inviting someone if they're not going to come?
There is a small group of people in my life who are completely understanding and do not treat me with discrimination because of my disability. Discrimination That is a harsh word. Oh yes, their actions may be minor, but every person who sighs when I need to cancel because I'm not feeling well. Every person who just stopped inviting me to spend time with them because my health was an inconvenience to them. It is discrimination and I have no tolerance for it.
I used to feel guilty when I had to cancel. I've missed both bridal and baby showers. I've missed birthday celebrations, and even holiday celebrations. Hell, I've even missed weddings - once in a lifetime events. Do people think I stay home because I want to? I think some of them do and I resent them for that judgment.
People get upset when I don't want to do anything after work. The thing is that work is not optional. If I don't work, I can't pay my bills. If I can't pay my bills, I lose my vehicle, and possibly my home. So, I have no choice but to make work a priority. There are days when I just don't have the energy to socialize anymore. If I go out after work, I will be exhausted the next day and frankly, I'm not willing to let anything negatively impact my performance at work.
People get upset when I don't go to food related events on weekends. They figure if I eat something with gluten, I can just go home. No harm, no foul. They think it is worth the risk. This isn't like a simple case of food poisoning where you puke until it's out of you and then feel better. The effects of gluten ingestion are long lasting. It takes me days to feel better. I'm not going to spend a few hours of one day eating out, only to be incredibly sick for a full week afterwards. The pros do not outweigh the cons.
My biggest pet peeve are people who know someone with Celiac and compare me to that person. My friend so-and so has Celiac and she can <fill in the blank>, so why can't you? Well, my friend so-and-so is a brilliant programmer, you work in computers, why can't you write a program like they can? Oh, because your computer skills are different? Well guess what? The way Celiac Disease affects my body is different.
Celiac Disease has over 50 symptoms. It is an auto-immune disease, and so has the potential to impact every part of the body. The variance in symptoms and the fact that no 2 patients have the exact same reaction makes it one of the hardest illnesses to diagnose. In fact, 6 to 10 years is the average time a person waits to be correctly diagnosed.
Because symptoms are primarily triggered through the ingestion of foods containing gluten, it is often thought of as a Gastrointestinal Disorder. However, it is so much more than that. Many people react topically and have to use Gluten Free shampoos, lotions, and makeups. I know of people who have had to move because they live near a wheat field and during harvest, they inhaled wheat particles in the air and became deathly ill.
The bottom line is this: I'm going to do whatever I need to do in order to make sure my health and wellness needs are met. If that is too much for some people to handle, then so be it. I'm not going to waste my energy on those people.
If I don't put my health first, then I am of no use to the people in my life, who count on me day to day.
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