For Those Wondering Why My Chronic Illness Makes It Difficult to Go Out

Dear Friend,

I am so grateful when you make the effort to invite me to something. Please understand when I am hesitant to make plans, and don’t judge me when I cancel plans that I have made. As someone living with a chronic illness, my health is often unpredictable. If I can’t make, here’s why.

1. I’m afraid of creating public drama.

Every time I go out, I risk collapsing in public. It’s no big deal at home, but I don’t want it to happen at a dinner party or – heaven forbid – at your wedding ceremony. The more significant or public an event is, the more I don’t want to be the reason that the paramedics are a part of the highlight reel.

2. I hate to cancel at the last minute.

Sure, I can rest up in anticipation of an event, but that doesn’t guarantee that I won’t wake up with a flare. It’s easier to say no than it is to cancel on you at the last minute – especially if I have done it to you before.

3. Morning activities can be too challenging.

Brushing my teeth, washing my face and brushing my hair takes a lot out of me. Raising my arms to the level of my face drains my head of blood and I generally need some time to recover from each of these activities.

Showering can turn a good day into a bad one in ten minutes flat. Sitting upright, using my arms, and breathing in the humidity for ten minutes often sends me back to bed to recover.

Dressing is complicated by the energy expended walking back and forth to closet or dresser, bending over and straightening up, lifting legs and arms and little balancing acts that a healthy person never even considers. By the time I am dressed and ready to go, I am exhausted and it probably isn’t even morning anymore.

4. Activities involving walking often require too much energy.

Accessibility devices are a great help with joint and balance issues, but they can’t pump my blood for me. I may be fine to walk a few meters through a parking lot, but I can’t keep up that pace and activity level for long. Even with breaks to sit on my walker-seat, sometimes the activity of walking is just too much.

4. Outdoor activities are often difficult for me.

Outdoor activities are off-limits unless the weather is very moderate. Having dysautonomia means I cannot regulate my body temperature properly, and my heart condition makes it difficult to breath in humid weather.

5. Activities involving meals can be inaccessible to me.

Lunchtime or dinner visits can be very difficult. It is a lot of work to just breath while sitting upright, never mind chewing or speaking at the same time. Digestion also draws a lot of blood to the abdomen – making POTSies, like myself, feel uncomfortable and dizzy after eating.

Remember, accessible means something different to me than it does to you. The obstacles that I face may be invisible to you, but they are very real.

6. I just don’t feel well.

Let’s say it’s the perfect storm of an activity – a low-key afternoon visit in your air-conditioned living room on reclining furniture. This is definitely the easiest type of socializing for me, and the most likely for me to engage in. But I still don’t feel well a lot of the time. The systems in my body just aren’t working properly. How much do you feel like socializing when you have the flu?

That’s not to say I don’t want to go. While a healthy person may want to curl up in bed when they have the flu, a person with chronic illness is willing to push through the low energy, headaches and dizziness for the sake of a pleasant visit with a friend. When you know your flu isn’t likely to end, you learn to work around it where you can.

7. I am afraid you won’t believe me.

All of these invisible obstacles are exhausting, and explaining them to healthy friends can be almost as bad. This illness is difficult for healthy people to comprehend. I know it sounds like I am making excuses, so I wonder if you believe me or if you think I am exaggerating.

But chronic illnesses tend to follow an unpredictable pattern. I am not always in a flare – something that is inaccessible to me today, may be just fine at another time. So please don’t forget about me. This illness is isolating enough, without me isolating myself in embarrassment or fear of what people are thinking about why I can do this but not that, or why I can do something one day and not another.

Thank you for continuing to invite me, and for understanding when I can’t make it. Please believe me, I would much rather be able to go.