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.