What My Mornings With Chronic Illness Are Really Like

Like many people with chronic health issues, I have difficulty explaining to generally healthy adults what it’s like to live with multiple complex chronic illnesses. I have Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, dysautonomia, mast cell activation syndrome and several other disorders because why not. Each one of these disorders or syndromes needs to be explained separately as each manifests differently. I have both a one sentence and a one paragraph description for each that I pull out when I see a new doctor, make a new good friend and decide “it’s time for the talk,” or have to explain this part of my life to some random person who’s seeing me be sick and not understanding what’s happening. But those short descriptions are not enough. They don’t capture what living my life is like. So I’m going to explain what my mornings are like. Just the mornings. Trust me; it will be enough. You’ll understand.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

7 a.m.: I wake up ideally at 7 a.m. if I haven’t had a histamine dump at 4 a.m. (which I occasionally do, and in which case I’m up at 4 baby!). I almost always wake up on time…usually in the middle of some unpleasant dream or other (thanks anxiety). My first task is to breathe and to consciously tell myself that the dream world I just left isn’t real, I haven’t just lost an arm in a fight with a post-apocalyptic over-sized eel monster, and I’m safe in bed. Putting the dream world aside, every morning I wake up feeling awful and not rested. Have you ever woken up with a seriously bad hangover? An “Oh I regret every moment of last night” hangover? It’s very close to that. Everything hurts, your head is pounding, stomach rolling, the light hurts your eyes and you want to roll over and be unconscious again. That is my “every morning.”

7:05 a.m.: I do a physical assessment. What hurts? I start to move around a little bit—and I do mean a little bit. With Ehlers-Danlos syndrome (I have the hypermobility subtype) I am prone to joint subluxations and dislocations. So my first order of business body-wise is to assess if anything has popped out in my sleep. The answer is usually yes and usually ribs or vertebrae. The next order of business is to gently stretch and move to pop those things back in. So for about 15 minutes I’m wiggling around on the bed like a slow motion snake trying to put my skeleton back together. Grunts and curse words inevitably spill out of my mouth.

7:20 a.m.: Once all the bits are put back together as well as they can be I slowly sit up in bed, though not too fast or I will trigger my POTS and I’ll faint. Then I stand (also not too fast). Off to stumble to the bathroom for my morning ablutions and an unpleasant poop. All pooping is unpleasant for me thanks to my mast cell activation syndrome and/or irritable bowel syndrome and/or Ehlers-Danlos syndrome. Who knows? That’s part of living with these disorders. I never know for sure what caused a symptom. I wash my hands and face, brush my teeth and then I grab my pre-organized medications for the day and get a glass of water from the kitchen. I take the 12 prescription medications I have been told to take first thing in the morning.

7:35 a.m.: At this point I feel even crappier than I did when I first woke up. My POTS is making me dizzy and short of breath so I lay back down in bed, waiting for the medications to do their jobs and transmogrify me into some semblance of a human being. Most mornings I also wake up having a mast cell reaction—usually with facial and chest flushing along with tachycardia…or maybe I’m spasmodically coughing for no good reason. I could be reacting to something I ate the day before and have an inexplicable rash on my arms.  I could be reacting to the pollen in the air and my legs feel like they’re covered in mosquito bites.

Most mornings I also wake up with some symptoms of dysautonomia: blurred vision, tremors, muscle weakness, just roll the dice and pick one.  I also typically have some type of neuropathy (nerve pain) going on in my hands, feet, jaw or neck, so that adds an extra challenge. All told I generally stay in bed about an hour letting these things fade as much as they’re going to for the day as coherent consciousness sets in and the medications begin to work. I’ll continue stretching and moving my body, check my phone for urgent work issues and play a word game to distract myself while my body sorts itself out a bit more.

8:35 a.m.: It’s go time. No matter how I feel, it’s time to get up. I get dressed, talk with and hug my husband, give the cats some pats and move into my home office to start my work day. I am lucky enough to work full time from home, so my commute is a mere 15 steps.

No breakfast? Nah. I can’t eat before 10 a.m. without throwing up.

No shower? No way. Showering is, despite my mere five minutes in the shower, an hour-long procedure that results in me nearly fainting every time. Showering happens during the day or at night when I have buffer time.

No morning meditation? Ha. Try meditating when your body feels like it’s actively failing in a dozen different ways.

No morning exercise? That’s hilarious.

No making the bed? No. Because the second I’m off of my Zoom calls, I’m back in bed because that’s the most comfortable place for me to work.

That’s me. That’s my morning. No matter what time of day you see me, I have dealt with at least that much (gestures vaguely at the above paragraphs) so far. To be fair, the rest of the day is less awful, slowly. Unless, that is, I have to sit in a chair for more than an hour at a time. Or if I have another mast cell reaction. Or random joint dislocations. Or stabbing nerve pain in my…I don’t know, pick a body part. I deal with all of that all day, often on camera, without people seeing it or noticing it. Have you ever dislocated, then relocated your wrist in the middle of a meeting? I have! A bunch of times! If there’s one thing those of us with chronic conditions do well, it’s to hide our symptoms from others. When you feel awful all day, you learn there is no point in telling people around you how awful you feel. It’s not helpful to us or to you.

If you start your day without having to do the above things, or similar routines specific to your chronic illness, and your days are relatively pain and physical and mental struggle-free, then you live with incredible privilege. Please acknowledge that, both to yourself and to others.

Truly hearing and taking on board the experience of others is the first step to empathy. I hope the story of my mornings can build some empathy, not for me, but for all people with chronic health issues whose “invisible sick lives” go unobserved, unnoticed and unappreciated. We do so much more just to get to the starting line of the day. We take two steps for every one step you take. We fall down while you stride forward. We don’t talk about it. We deal with it. This is the hand we were dealt. If you take nothing else away from reading this piece, let it be this: Every one of us has a different daily experience. Be loving. Be supportive. Believe people who have chronic and complex conditions of any kind. Above all else, be kind. You can never know someone else’s life, but you can demonstrate that all important empathy.