The Loneliness of Living with Chronic Illnesses & Pain

I was recently binge-watching a TV show on Hulu (I have a free trial month) as I got over the pain of the latest episode of otitis media (recurring ear infections; they call it “swimmer’s ear” but go figure, I don’t swim).  Not the worst its ever been, but still a hella painful two weeks.  Previous to that, I had just gotten over a very painful two-week episode of polycystic ovarian syndrome (PCOS) triggered by a test at an OBGYN appointment.  I had a few days of “normal” (meaning daily but manageable pain) sandwiched in between two intervals of hell.  Everyday, it was like, What fresh hell is this? 


Laughter For Coping with Physical & Emotional Pain

I like to watch something funny to deal with pain because laughing releases endorphins also known as “the feel good hormones.”  (I learned the importance of laughing from living with bipolar disorder my whole life.)

Half way through the fourth season of the aforementioned Hulu show, the story took an abrupt, illogical, and depressing turn with one of the main characters being ruined in a span of three episodes. (Mind you: this show is a comedy–not Grey’s Anatomy where you expect a plane crash, hostage crisis, or bomb scare every fourth episode!)  The main couple, which I grew to love, was destroyed. I felt angry. Betrayed. Sad. And silly—Why do I care so much about a fictional family? Why?  (I don’t want to say what the TV show is to avoid spoiling anything for anyone so click here only if you want to know what show I’m talking about.  You’ve been warned.)

There Are Other Meijer Pharmacies

Living with a disability or chronic pain or fatigue or depression sometimes means spending a lot of time in bed.  There are times when I’ve watched TV shows I actually hate just to hear the sound of another human’s voice.  A couple years ago, the Meijer pharmacy I attended closed down. I was devastated.  My family said, “There are other Meijer pharmacies.”  I understood that but at that point in my life, I saw my physical therapists and pharmacist more than I saw any of my friends and relatives.  I did physical therapy three times a week.  My pharmacist was part of my weekly routine.  Though we never had any long conversations, he was a staple in my life as a person with five illnesses.  I felt silly—I thought, The pharmacists probably won’t even remember me after the pharmacy closes.  The one thing that made me feel better is that no one lost their job—Meijer  relocated each pharmacist to other Meijer pharmacies.  The day the pharmacy closed, I brought one of my cards; I paint watercolors.  I thanked everyone for all of their hard work.  My pharmacist got teary eyed and said, “We never had anyone like you.  All the things you’ve been through.  It’s incredible.”  I knew he “got” me—he got what it’s like to live with chronic illness.  Something some people who’ve known me my whole life don’t grasp (see “you can’t be in pain all the time” in, “#AncientAbledProverbs: 45 Things Not to Say to People With Disabilities“).

How You Can Help Friends Who Are In Pain
The other day, I got an encouraging letter in the mail from a friend.  A letter via airmail!  A few weeks ago, my niece visited me bringing me basil chips because she knows basil helps me deal with PCOS pain. One of my pet peeves is when able-bodied friends with cars say they’re free to meet up “whenever” but don’t make any efforts to visit knowing my transportation limitations (the world isn’t as disability accessible as many think; sometimes I randomly lose feelings in my arms and legs).  If we see each other, it’s because I’m in the city usually due to doctors appointments.  Finally, don’t forget to include us in your plans.  Invite us (even if you think we can’t make it or do the activity in question).  Get creative!  A doctor friend of mine, who understands what I’m going through with myasthenia gravis, travels often.  J* has hiked Rocky Mountain National Park multiple times.  He sent me a book with stunning photographs of the Park.  J came over and narrated to me what each image looked like in person.  It was as if I was there!  For one afternoon, I got to hike Rocky Mountain National Park.

Does illness ever make you feel lonely?
–Your Stylist, Jessica Gimeno

Also ICYMI, Fashionably ill ® is celebrating its 5th anniversary!  So I’ve partnered with Holly Berton of Pink Fortitude to do a giveaway; the prize is a $100 Target gift card. The giveaway runs from Wednesday, August 2nd at 01:00 AM EST through Tuesday, August 8th at 11:45 PM EST.

 

Good luck!

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JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

3 thoughts on “The Loneliness of Living with Chronic Illnesses & Pain

  • August 2, 2017 at 10:28 pm
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    Loved this! I would love to have people like that in my life but no such luck. It gets very lonely and I still work part-time!
    Thank you for your thoughtfulness and honesty, it really does help!

    Reply
    • August 2, 2017 at 10:43 pm
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      You’re welcome! I was a little bit embarrassed about some of the things I wrote in my article; it helps to know that I’m not the only one. I’m glad that it resonated with you.

      Reply
  • August 3, 2017 at 6:57 pm
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    I was injured almost 9 years ago, broke an 8mm piece of bone off a lower vertabra and herniated a disc, a 3rd was protruding and a 4th with disc degenerative disease. I had lifted someone at work following orders from my boss who weighed approx 140lbs, deaf, blind, mute and mentally and physically challenged. He was injured and instead of our nursing staff coming to take care of him, I was told to do it with no medical background. His injury turned out to be a compound fractured femur and when I complained my back hurt, I was sent for an xray, one day off work and one physical therapy session. He was brought back to our program 3 mths later and his mattress put on the floor. He was also incontinent so I had to bend over every 2 hrs to check and change him & I got to the point I couldn’t stand up. After 9 total Drs, a shrink, 4 months of physical therapy, I was left with permanent nerve damage, the offer to put in a stim implant to block pain but decrease my limitations further and still be on a regiment of pain meds the rest of my life. I know all about binging to take your mind off pain, I don’t sleep more than two hours at a time because when I move in my sleep, the pain wakes me up. I’ve also had swimmer’s ear, finally had a Dr in Mesa Arizona do some procedure that stopped it from re-occurring but I lost 40% hearing in one ear, 60% in the other ear =( Chronic pain is no joke & I feel for you. I find music meditation as another form of binging to not focus on pain levels. I wish you the best & thank you for the contest. I would buy school supplies and donate them to our school district if I won.

    Reply

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