chronic illness, chronic pain, invisible disability, invisible illness, migraines, spoonie, spoons
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Guest Post: The Social Lives of Spoonies

Today we have a guest post from the lovely Anna of Migraine Brainstorm. Anna has been a spoonie for three years, suffering from chronic migraines.  However, when she isn’t in pain, she teaches English, crafts, paints, and writes. Check out her work on TwitterPinterest and Instagram, and contact her by email: anna@migrainebrainstorm.com.

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Do you find yourself on the couch most Friday nights? Perhaps conducting deep and lengthy conversations with a pet, or desperately searching for a new quality series on Netflix? Maybe you have cancelled plans to hang out with some ice packs, a heating pad, and a big fat pile of meds? Well, you are not alone!

Er… except that you are, probably, literally alone.

1st

Chronic pain has the capacity to change every affect every aspect of a person’s life, and Friday nights are no exception. Before my extended run-in with pain, I happily maintained a robust network of friends. From besties to casual acquaintances and everything in between, I cultivated the full social calendar of an extrovert. I would happily invite 30-odd people to a party and then happily host them until well past midnight. Imagine! I could and did go out for drinks after work, and I would travel across town without worrying whether I’d have the energy to get back home. Of course, all that has changed, and now my social life looks quite a bit different.

I will acknowledge that all relationships are in a constant state of change however imperceptible from the inside: regular ol’ unpredictable life makes sure of it. However, with a sudden change in abilities — such as any dramatic twist — these differences can come on so quickly that it can be hard to adjust with any sense of normalcy.

The biggest game changer is that chronic pain or illness can often mean that our energy is limited, and whether we measure it in marbles, battery power, or spoons, we’ve only got so much to spend. Thus, necessities must often take precedence over fun times. If a relationship used to revolve around common interests such as exercise, exploration, late nights, drinking, travelling, or any kind of boisterousness, that relationship can land on the rocks in the event of chronic pain or illness. And if a past relationship was one in which the spoonie frequently used act as a caregiver or visitor, the relationship might be whisked right out to sea.

2nd

From a spoonie’s perspective, it can be unendingly frustrating – or even devastating – to watch friends, family, and even lovers fall by the wayside just when we need consistent love and care more than ever before. It can be tempting to add guilt to the mix when that little voice in the back of our heads blames us for not being the person we used to be. It can also be tempting to push ourselves to mask our pain or fake it to maintain some semblance of the relationship that once was. We might also be angry with others who are unable or unwilling to meet our needs. But none of these knee-jerk responses are usually very helpful. So what is?

For me, being conscious of, and able to articulate my needs has been the first step in reassembling and maintaining any sort of social life. I let people know that my energy is limited, and that if they want to see me they probably need to come over (and then get the heck out before 10pm). They will need to avoid yelling, smoking, and wearing perfume. They must not insist we listen to music. They must not hate me if I cancel at the last minute. Some people have been able to adapt to this. Others haven’t.

Building new common interests has also been key in making sure I’m not a total social recluse. The friends with whom I used to go dancing late at night in loud places with booze and such? They still dance, but we play cards together and have games nights. We’re addicted. Some friends have not been able to adapt to this new hang out routine.

Since my travelling abilities have been reduced, some long distance relationships have been maintained through Skype and phone chats instead of in-person visits. Some friends have been great about this. Others haven’t.

Friendships that are contingent on my ability to give time and energy and spontaneous support? They have faltered.

Do I miss some of those friends who don’t fit into my new routines? Yup. But what I’m finding out, however callous it might make me, is that I don’t miss them that much. What I really need is a core group of folks I know I can count on, who love me, respect my limitations, and are willing to meet me halfway (…or 9/10ths of the way). The people who can’t do that? They’re going to find other ways to satisfy their needs as I have, and that’s just fine.

Relationships change all the time with any infinite combination of circumstances. I refuse to feel guilty or sorry for myself because of mine, and I pledge to find ways to maintain a support system that doesn’t leave me alone every Friday night.

How do you maintain a social life despite chronic pain or illness?

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1 Comment

  1. To maintain my social life I’ve gone back to my roots and am doing most socializing online. We have our close friends, and we do spend a good amount of low key time with them.

    What my boyfriend and I have really grown to appreciate is the lack of drama. Our lives are simpler, but more compassionate, and we spend more time doing what really matters.

    Liked by 1 person

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