Wednesday, August 1, 2018

Lonely Together

"Part of what makes pain "painful" is its privacy and unsharability, the feeling of aloneness."
David Biro M.D., Ph.D., Listening to Pain

“Morning Sun” Painting by Edward Hooper (1952). Image courtesy of Columbus Museum of Art

Lonely and together, these words seem like they contradict each other. Lonely refers to solidarity, without companions, together is more about being with other people. But its possible to experience both at the same time, as I've come to realize more and more lately. 

A friend and I were recently discussing the challenges of living with a chronic illness as well as our love for solitude. Though we both manage things quite well for all we have to deal with we were surprised to hear each other agree on how being in a crowd could feel quite a bit lonelier than being alone. In fact, the more people that are in a room seems to actually proportionately increase the feeling of loneliness. That was sad in of itself to even admit out loud but wow did it feel good to know I wasn't alone in thinking it.

Here are two things I've personally experienced and curious how many others out there have as well.

1. Being out with others can feel scary, that perhaps the horrible pain will kick in after two bites of food or some time later (because it's always so annoyingly unpredictable). It will take over in the middle of playing a fun game or anything that is remotely enjoyable until it hits you and becomes an internal battle and you are left doing your darndest to make it through, desperate to avoid ruining everyone else's good time.

2. There is this feeling deep down when no matter how hard you try to relate to everyone and have a good time, it comes down to the fact that you just cannot when pain or sickness has decided to rear its ugly head (or should we say stomach).

"When you combine a sufferer who sees only his pain with an outsider who can't see it at all, the result is a widening of the normal barrier that exists between people. A great wall has suddenly sprung up."
- David Brio

Adding to the mix the pain is due to a digestive system that has somehow forgotten how to process food and drinks, a staple not only for living but present in most social outings, this great wall can feel like a looming tower at times. It's only natural. After talking with this friend about it helped me to realize we are human and it would be crazy not to feel isolated. 

If I'm being totally honest about my own personal struggles I would add not being a mother to the mix as I'm sure many of you can include your own additional struggles - not able to work or attend school, no partner or caregiver to help, not feeling supported by those who are around, etc. 

Now comes the hard part. How do you say to these people you care about,

"Hi, I'm just really angry/sad that you all can eat and drink and make exciting plans. I desperately miss that, I want that back. I envy your effortless freedom and indulgence, to work and play and procreate and be spontaneous."

That may sound terrible and I want to be clear it's not always this hard, I still have fun, love a lot about my life and find joy despite the struggles. But I would be pretending if those thoughts didn't occur at times when it hurts to even just take a bite or make any plans. 

Because I fully embrace the benefits of a good therapist, here is what I learned from sharing these unwanted feelings with her, something I didn't want to share with the people I love most.

1. Stop feeling guilty
    - Feeling like I've done something wrong just adds another layer of misery. It is completely natural to be upset, to feel isolated when being deprived of something so innate to human nature and a very big part of being social. 

2. Acknowledge it's me not you
     - I feel like this because of my own circumstances, not because the people I'm around have done something wrong. I'm not angry at any one person or sad because someone did something wrong, it's what I'm missing. 

3. Embrace solitude 
     - If I feel good being alone, embrace that! And sometimes that's exactly what I need. Curling up with a book or movie, going on a walk (well the dog doesn't count!), taking naps, singing your favorite songs out loud, or finding a punching bag to let out that anger; maybe these are the options some days and that has to be okay. Hanging out with one or two people might be easier too, just be open to what works. Or as my favorite yoga teacher Adriene (who offers gentle free classes on YouTube) says "Do what feels good." So yes, DWFG.

August is Gastroparesis Awareness Month and I'll be sharing lots more thoughts, events and tips over the next few weeks. If you relate to this please share and know you are not actually alone even when it desperately feels so. And when you feel that way remember, we can be lonely together.

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