Coping with Loneliness When You Are in Chronic Pain

You know that feeling of being excluded from everything?

Yeah, I didn’t think I knew it either, until the last few months went by, with me watching everything “normal” people do with their summers. This is the third summer I have been in constant pain, unable to enjoy gardening, camping, hiking, biking, kayaking, and driving to the coast or the mountains spontaneously. Meanwhile we were only invited to three social functions, all of which were barbecues at friend’s houses, and we couldn’t go to one of them because it was a terrible, terrible day for both my boyfriend and I. He is recovering from his third hip surgery in three years and is in quite a severe amount of pain any time he moves too much, too fast, up and down stairs, in and out of the car, up and down to pick something off the floor, or any number of other common daily tasks. We try our best to help each other out with our respective pain levels, and there are a few things we’ve both gotten good at doing to quiet the other person’s pain, and that is an amazing thing to have found in a lover.

The not-so-amazing news is that we have lost all of our old friends, and are down to a list of people smaller than the number of fingers on one hand. It was a sad process to have lost those friends, it makes me feel like there is something wrong with me that makes me not worth loving or helping like those we have helped in the past. At the same time, we haven’t had jobs or been well for more than 3 years, we do not have money coming in except for food stamps, and nothing has gone right for us for so long it seems like one long, super effed up joke being played on us. But still we help our friends, even if others have said they don’t deserve to be helped, we give people that chance, and sometimes multiple chances. If someone needed something from us, all they ever had to do was ask. Even after I became sick and my boyfriend had gone through the first of several surgeries, we were happy to share what little we did have, whenever we had it. Sadly, only one of those friends is still around to now reciprocate with his time and abilities. B, if you read this, we think you are just fantastic. But even B has a chronic health condition of his own, so his faithful friendship really only proves my next point. Some sparse few of the people I have known in the past have stepped forward to express concern or let me know they know someone else with one of my conditions and I appreciate all those moments of compassion as well. The vast majority of my old friends have been ignoring my illness for years, I’m lucky if they acknowledge it once a year, and then only with either great judgment and loaded words, or like they just remembered “something is wrong with me”. They even ignore direct pleas for help, which are beyond difficult for me to make. I struggled for weeks about asking my mom for a little bit of money for the first time in years (besides the occasional medical bill that has to be paid up front, she helps me out with many of those things, like MRI’s). I don’t have anyone, even family, left who can actually help me. Not always through a fault of their own, in my mom’s case it’s debt and planning a wedding and being all the way in Indianapolis while I live in Portland that prevents her from providing any assistance most of the time.

In stark contrast to our original group of friends jumping ship as soon as possible, my new (and renewed) friendships with people who are dealing with chronic illness and pain are so much more enthusiastic, transparent, supportive and understanding, not to mention loyal. I know that the girls I talk to honestly about my illness and who talk to me about theirs in turn are my friends no matter what happens, no matter if one of us gets completely better tomorrow. Not all of my spoonie sisters have illnesses or even symptoms that match, but we understand each other because this is a lonely corner of the world to walk in and if you find anyone else here along your journey, you pick them up and carry them with you until they are strong enough to walk next to you.

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

2 responses to “Coping with Loneliness When You Are in Chronic Pain”

  1. Dead Men Don't Snore says :

    It is so hard losing friends as a result of being chronically ill, as if being ill itself wasn’t enough to deal with. I too can count the number of friends I have left from before my illness on one hand with fingers to spare and being ill makes it very hard to meet new people and find knew friends to replace the old ones. I’m really glad you have been able to take some comfort from other spoonies although I realise that doesn’t undo the hurt of the friendships you’ve lost.

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    • Jessi Finds Out Fibro says :

      It does make it hard to replace the friends you lose, at least in the same way that you made friends in the first place. But online support changes everything, you can become closer with someone you’ve never met, or someone you’ve only talked to once or twice ten years ago, than someone you’ve been close friends with since grade school, and the closeness comes from sharing things about your personal illness journey that you cannot share with anyone else in your life. I have made so many beautiful and powerful friendships since my illness became a full blown part of my daily life. They reassure me when new symptoms strike, they do research for me, they offer up solutions for dealing with insurance, doctors, and financial problems. It is crazy to me that my new friends who are so sick, and so miserable, but they will drop everything and make me a priority in their already difficult and busy lives. While my healthy, financially stable, unburdened friends have barely offered sympathy, much less any kind of meaningful help. I think part of what has healed the hurt of losing those friends from my previous life is that some of the spoonie sisters I now seek solace in are from my past, but they are not people I kept in touch with very well. Reuniting with old friends does somewhat fill the void left by other friendships gone stale. I am sorry you have also felt the sting of losing people along the way. It’s hard when you can’t do the things you used to do together, and when you are able hang out there isn’t much to talk about anymore. I hope that the future holds many new and important friendships for you with people who will understand, empathize, and collaborate with you in your times of need.

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