Chronic illness affects all aspects of life, even the small things like leaving the house. When others can't "see" that you're sick, these altered moments can appear puzzling, at best.
My friends in high school thought I was boring. I never wanted to hang out and, when I did, I didn’t actually want to do anything other than sit and talk. A good portion of the time I’d have to put my head on the table or lie down. My now husband actually thought I didn’t consider him a good friend because of how infrequently I wanted to see him for the first several years of our friendship.
I’ve also been told to try being more spontaneous. I thought there was something wrong with me, that I always needed rigid plans and couldn’t handle them being changed last-minute, or just going with the flow.
The reality is that it has nothing to do with them, or even with what I want. To get ready to hang out, even for something low-key, there are a million decisions, sacrifices, cost-benefit analyses, preparations… What seems to everyone else that I just don’t like hanging out, we’re not great friends, I’m boring, etc, is really just me trying to be proactive about my health so that I can ACTUALLY enjoy myself when out with friends, instead of being miserable the whole time.
Things I might consider when making plans:
Have I eaten enough yet today to not get hypoglycemic while I'm out?
If I do become hypoglycemic, will there be food available that I can eat? (Usually no)
How much food should I bring?
Most of my food requires being cooked immediately before eating -- will there be a stove, pan, oil, etc. available?
How long will I be there? Do I need to bring my pills with me? (when your XL pillbox is too small to contain all of your daily meds, it’s not always a simple question)
Additionally, I have one medication that needs to be diluted in water and taken 4x daily, but also can't be too hot, too cold, or exposed to light. Do I need to bring it? If so, do I also need to bring a cup so I can dilute it?
How much water will be available? How much do I need to bring? (I have to drink constantly)
Will I need sunglasses? (I am prone to migraines and can get suddenly light-sensitive)
Will there be loud noises? Bright lights? Strong smells?
Will we be outside? Do I need a hat or sunscreen? (MCAS can be triggered by sun)
Will everyone else be eating delicious, fragrant food? Am I able to handle the disappointment of not being able to eat/drink anything good? Will there be something fun for me to distract myself with while they enjoy it?
How many people will be there? As an impressive introvert, the more people = the more energy it takes out of me.
What is my current energy level? (EDS/POTS/MCAS can all cause fatigue, sometimes to the point where I end up laying on the floor and can’t even lift my head)
How “sick” do I feel? Is my stomach making concerning noises? Do I have an aura or any warning signs of impending migraine? Does my head feel fuzzy? Am I having difficulty breathing? Are my speaking patterns odd?
Do I need a bra? (bras make my breathing difficulties and back/shoulder pain worse, but not wearing one in certain settings makes me self-conscious)
What are the bathrooms like where we're going? Can I get to them frequently without having to go far or up too many stairs? If I get really sick (I’ve many times had to lie on bathroom floors crying until the nausea/vomiting/diarrhea/pain/whatever passed), will I have privacy?
Will there be a room I can go to if I need quiet/darkness/alone time?
How much pain am I in now? Can I walk? Can I sit for long periods of time? Can I carry things? Can I hold my head up? Can I use my hands for things like crafting, frisbee, etc? Can I drive? Can I dance?
How long will I have to stand? (EDS causes pain when standing, MCAS makes it hard to hold myself upright, and POTS -- postural orthostatic tachycardia syndrome -- causes massive changes in blood pressure and heart rate when standing)
What seating will be available? Will it have back support? A cushion? Will there be space for me to move around if (or really, when) my hips are in too much pain to sit/stand any longer?
Will there be someone with me who knows how to help if things go south? If I’m too far gone to advocate for myself, will someone speak up for me?
How is my mood? Will I be fun to be around? (EDS comes with hormone imbalance, anxiety, depression...)
Will it be hot/cold? Do I need to bring other clothes to change into if the temperature changes or we go into AC, etc? (temperatures can trigger MCAS reactions)
Will I be stranded? If I need to get home early, will I have to wait for the whole group to leave, or will I have the means of getting home myself?
Do I have anything important to do tomorrow? If I use up all of my spoons and am incapacitated tomorrow, will that be a problem?
If I mess up any of the above, how sick will I likely get, and am I comfortable enough with these people to ask for help if it comes to it? How humiliated will I be if they have to witness my worst?
As I hope you can imagine, it’s pretty difficult to do this too often. If someone makes a last-minute change, I have to reevaluate the whole list and may end up needing to repack my things, eat a quick meal, etc. Even when things go as planned, it’s exhausting, time consuming, and often doesn’t turn out to be worth it. But what’s the alternative? The less I make an effort to hang out with people, the fewer people I am close to. And this list becomes much heavier when trying to meet NEW people -- the anxiety and embarrassment multiply, it becomes more difficult to explain all of my necessary precautions and seemingly eccentric behavior. So it’s worth it to risk failure in order to show my friends and family I care enough to be with them, just so that I don’t have to branch out and meet new people. But the more these people see me at my worst, the more my identity becomes that of a sick person and less of someone to hang out with. It’s cycles like these that make people with invisible illness feel so isolated, but I hope with more openness, people can find empathy and learn to accept our idiosyncrasies.