No Instructions Included: A Problem When You Have So Many illnesses

I recently assembled something–it’s an art thing I ordered online.  The instructions included vague pictures, and they were written in a foreign language.  I’m not sure if I did it correctly but it’s done.  When you have many illnesses, you’re winging it.  Everyday.  You are constantly improvising.  Improv is great for comedy but it’s bad for illness.  You and your physician will try to treat illness B but illness A gets in the way and vice versa.  Your options are further limited by the presence of illnesses C and D and E.  The medication that once helped you manage illness B no longer works because you now have illness D, which has destabilized illness B.  My body is a game of Jenga.  (Does anyone remember Jenga?)  I’d classify my illnesses as:

  • Tier 1 illnesses–if I don’t take my meds for these, I will die
  • Tier 2 illnesses–disruptive and serious but less threatening than tier 1
  • Jan Brady illness(es)–the illness I forget I have

Eye Swollen Shut

autoimmune tsunami: what I looked like last month

Last month, I went to the E.R.  My ears and neck were very red–they were on fire.  My back, shoulders, neck, ears, and face were covered in hives.  A few days later, my left eye was swollen shut.  I felt an awful pain I have never felt before, which is saying a lot since I have been in pain seven days a week for ten years.  I felt an aggressive push from the myasthenia gravis and I felt the full force of the endometriosis too and I felt the psoriasis worse than ever and I felt the full force of the otitis media (my daily ear infections)…and I would later be diagnosed with something that I still can’t pronounce.  (Okay, I just looked at my notes: It’s urticaria.)  So I was getting bitchslapped by five autoimmune diseases at the same time–an autoimmune tsunami.

I haven’t had any hives on my face in three weeks and my body is 99% clear.   Since last month, I’ve felt lost since “getting better.”  (You don’t really “get better” with many chronic illnesses in the way most people mean when they say “get better.”  But I’m out of the danger zone, which is better than being in it, of course.)  When you see doctor for A illness, she looks at A illness in isolation as if the other illnesses don’t exist.  When you see second doctor for B illness, they act is if illnesses A, C, and D do not exist.  What do you say to patients when they have multiple agonizing, incurable illnesses and some of those illnesses are also progressive (meaning they get worse with time)? The endometriosis is slicing up my insides.  I don’t know which illness has hurt me the most–the endo or the myasthenia.  Together, they have taken a bigger piece of me than either of them could have done alone.

It’s very easy to dole out advice like, if x doctor isn’t working, find another physician.  A few problems with that:  First, the bureaucratic red tape of finding someone within your network and second, if you have a rare disease (like myasthenia), it’s very hard to find experts in your illness.  And yes, I have seen several ENTs for my ear problems.

No Instructions Included

Last week, I exercised for three consecutive days after being inactive for weeks due to illness.  Having had bipolar disorder my entire life, exercise has always helped me with my mental health.  But I now have five other illnesses to consider.  (I was diagnosed with bipolar 2 sixteen years ago, and reading books actually helped me manage bipolar disorder after I was diagnosed.)  But was exercising last week good for a person with a handful of autoimmune illnesses?  I’ve been in bed all day today.   I have not exercised all week.

I am unable to control when I fall asleep–a natural consequence of the push and pull between having bipolar disorder and myasthenia gravis–two illnesses with contradictory demands.  Bipolar disorder requires a steady sleep schedule to regulate moods–something I mastered before I got myasthenia gravis ten years ago.  Myasthenia comes with unpredictable fatigue that requires naps during the day.  Painsomnia* (from myasthenia, endo, psoriasis) keeps me up at night, wreaking further havoc on my circadian rhythms.  Having many chronic illnesses means constantly making decisions, and not being sure if you made the right call.  Have I been doing ” the right thing”?  Nobody knows.  I have yet to find the “Here’s What To Do If You Have Myasthenia Gravis/Endometriosis/Psoriasis/Otitis Media/Bipolar 2/Asthma/Other Things” manual.

*NOTE: Does anyone know who invented the term “painsomnia”? I am trying to give that person the proper credit. –Thanks, Jessica


Hi there! I am a patient advocate, writer, and public speaker most well known for my TEDx Talk, “How to Get Stuff Done When You Are Depressed.” As someone who is juggling 5 illnesses: bipolar 2, myasthenia gravis, endometriosis, psoriasis, and asthma, I’m passionate about helping people who navigate life with both chronic physical & emotional pain. If you’re interested in hiring me to speak at your event, check out the CONTACT tab.

2 thoughts on “No Instructions Included: A Problem When You Have So Many illnesses

  • January 20, 2020 at 2:32 pm

    I love your blogs as they make me feel much more ‘normal’ in that I too have many of these issues. Along with my chronic depression I have Autoimmune Idiopathic Hypoparathyrodism along with hypothyroidism, psoriasis, psoriatic arthritis, regular arthritis, Addisons disease, gastritis, hiatal hernia, Gerd….I think that is it. (LOL??) Pretty much Fatigue Central in my body.

    I totally get your voice on one doctor looking at one thing, one problem and minimizing or ignoring totally the other issue(s) that just may or may not kill you.

    I used to think I had an autoimmune disease….end of my life as I knew it…..going to be fatigue-napping FOREVER! But, I learned to deal with it, somewhat.

    But getting a second diagnosis…let alone those that seemed to quickly followed knocked my snout in the dirt. That dark-debilitating depression kicked in for about 3-5 (never sure how long I’m ‘down’) months. Just last week, it all lifted I believe from prayer and a lot of self talking.

    Now, I admire you much for exercising! What I needed most was to clean my house. It has taken me a week – room by room, but I think I have a handle back on it – except for my own room (and any closet! in the entire house). I just shut the door. hehehe Nobody should be in there anyway.
    Thank you for all you do to help the rest of us out here, you are making a difference!!

  • January 26, 2021 at 12:17 am

    Re: the healing qualities of a whole food plant based diet

    Doctors are not trained about nutrition so most doesn’t discuss how dairy, eggs, meat, and refined oils and sugars are detrimental to health and often the culprit behind autoimmune diseases, inflammation, diabetes, hypertension, heart disease, reproductive health, mental health. The Physicians Committee for Responsible Medicine ( as well as are good places to find information.

    We have the anatomy and physiology of herbivores. The standard western diet of meat, dairy, and eggs hurts us. We need the phytonutrients and fiber from plants.

    Please forgive me for giving unsolicited advice. You must get a lot of it.


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