“I find this disease so isolating”

“I find this disease so isolating! Friends don’t understand, co-workers really don’t understand. I have no energy to do anything other than work and sleep so I have very little to talk about with my friends and co-workers. It is so frustrating! I miss being able to socialize” said fellow PI patient, Paula.

Looking for those who share in her feelings- she found plenty.

Lack of energy seems to top the list overall when living with chronic disease. Which means SLEEP is a major priority.  I know my Dr suggested I get 10 hours a night!!!  There’s not much day left after sleep, eat, work, repeat. How do we fit in socializing with family and friends? If we have energy it’s used for basic necessities- seldom for fun.


For years, I was what I referred to as a high functioning PI patient.  I traveled for work several times a month and felt (mostly) good.  I took my SubQ with me and infused in hotel rooms without skipping a beat.  I had energy for family and social events.  I seemed normal. This phase lasted for nearly 10 years too.  Damn, I miss that ole me.

Now, when I’m around healthy people I often feel ‘out of body’ as I OBSERVE them in pursuit of life.  I have mourned the ole me.  Sometimes it haunts me though.  There are days when I can pretend for a while and I’m always so proud of the job I’ve done- whether it’s a family get-together, exercise, lunch with friends or even grocery shopping, etc.  I pat myself on the back and look forward to the next day I can feel that way.

I find joy in days like this – and they sustain me until the next one.   I also allow myself ‘ to go down for the count’ when I need to and feel no guilt.

How can we find joy when we are feeling so alone some days?

First of all – by loving and respecting our bodies as they have kept us going this far – and will most likely continue burning the engine.  THANK YOU BODY! GOOD JOB ( well mostly).

What are we grateful for? Our family? Our pets? Our home? Our PLASMA DONORS? Our medical team?  THANK YOU! Remember this part all day long.

I find that connecting with people who find joy in my joy ( no matter how small or how big) help me through the day. Connecting with other patients often help us deal with this life long disease.

We really need to remember that chronic illness is only 1 part of our lives- it does not define our being.

Paula ended her comments with “ It helps to know I’m not alone.  I wish you all of the best on this lifelong journey.”  WORDS!  They matter.   These are great WORDS.

Now I’m going to find a way for something that ALWAYS makes me feel better.








  • Debra Posted September 30, 2017 4:56 am

    This is very isolating…. I have one friend outside of my zebra friends, who truly gets it. However, even at that, she is 100 miles away. For the most part, we do not look sick. But she asked me today, do your kids realize that you have bargained your life to see them in the last few years? That puts a different light on the struggle.

    • mm
      Carol Miletti Posted October 1, 2017 6:33 pm

      We ‘ bargain’ our lives frequently as we attempt to live ‘normally’. Thanks Debra

      • Brenda Posted October 3, 2017 2:03 pm

        Thank you for your writing so often they hit what I wish I could put down onto paper (or any other media) and say❣️

        • mm
          Carol Miletti Posted October 8, 2017 7:06 pm

          Thank you for your kind words. I’m glad that my words hit home and help.

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