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.

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

JessicaGimeno

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.

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