My Story: ‘Yes’ Means ‘Maybe’ Having a Life Outside of Chronic Pain.

My Story: ‘Yes’ Means ‘Maybe’ Having a Life Outside of Chronic Pain.

By Katelyn O’Leary

When you’re trying to have a social life with chronic pain, sometimes it’s more than just showing up

Disneyland is known as the “happiest place on earth.” Families, friends, and people of all ages and types go there to experience the magic and wonder of America’s favorite theme park. You can’t help but feel like a little kid again as you walk through Disneyland’s main gates and see sleeping beauty’s castle in the distance.

That is, of course, if you could walk.

Planning a trip to Disneyland when you have CRPS is challenging. My friend Maria had to email staff at the park about my condition, that I would need ice packs and a wheelchair for the day. Furthermore, I had to pack medications, snacks, and have a contingency plan in place for the “what ifs.”

What if I can’t wait for hours in line?

What if my leg hurt so bad I have to go home?

What if I ruin everyone’s good time?

Luckily for me, Disneyland ended up being a wonderful experience, one I will cherish for a long time. But sometimes it is extremely difficult to have a social life when dealing with CRPS. You have to schedule your life around your pain, which can be exhausting and stressful to no end.

A simple outing such as getting coffee or lunch is sometimes impossible. How will I get there? Will there be ice available for my burning leg? Did I pack meds? Sometimes I have to cancel appointments and outings the day of because I simply cannot get out of bed in the morning.

Chronic pain of any kind can be difficult to sympathize with or understand because we don’t look “sick” on the outside. Even though I can walk, I still use a crutch when I go out with friends to bars, restaurants, coffee shops or malls because it signals to strangers to give me a wide berth. If anyone even grazes my right hip or bumps into me, it can send me sprawling or gasping in agony.

So how do you maintain a social life while having chronic pain? You have to think outside the box. I meticulously plan my outings, but I also engage in a lot of social media and online interaction. Patientslikeme.com is a great resource for CRPS patients and for people with chronic ailments. I can pose questions and find solace in the advice of others.

Another great online resource is an app called Meetups. The app allows you to create a profile and then join different groups that “meet up” for particular outings. For example, in Los Angeles they have meetups for entertainment professionals, people who love hiking, and tech enthusiasts (these are just a few examples but there are hundreds of groups). It’s a great way to make new friends and try something new in an environment that encourages socialization.

We live in an age where we can socialize at the touch of a keyboard – but sometimes even that is not enough. CRPS patients and chronic pain sufferers have to work extra hard to “put on a face” for the world. We don’t like to worry our friends, family, or co-workers, so we mask our pain. We don’t want to spoil the party so we sit in the corner and smile and politely decline a dance or an offer for a drink.

When you’re 27 and living in Los Angeles, there is an expectation of socialization to be met. You have to network, get drinks, lunches and dinners with all sorts of people to further your career. LA is also one of the most congested cities in the world, where it can take an hour to drive 5 miles. Since driving is very difficult for me, I now use Access services (a transport service in Los Angeles for disabled patients, with reduced rates and service fees for those who qualify) to get to appointments and sometimes to social gatherings.

Chronic pain may limit our ability to socialize or engage in the world, but it also highlights the important things or people that matter.  Having CRPS has weeded out a lot of people in my life who are “fair weather” friends, and it has highlighted the friends I DO have who are unconditional in their support and love. This has been a blessing in disguise, a reveal that most people do not get in their late twenties.

And for patients with chronic pain, we need all the blessings we can get.

Katelyn O’Leary is a 27 year old South Bend, Indiana native who is working in the entertainment industry in Los Angeles. She suffers from CRPS after suffering an athletic injury in college. She is a regular contributor to the National Pain Report.

Follow on Twitter:

 @NatPainReport

 @DeeLiteFool (Katelyn O’Leary)

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Authored by: Katelyn O’Leary

There are 4 comments for this article
  1. Katie O'Leary at 11:16 am

    Hi L,

    I’m sorry for the delay in my response. But I use ice for my leg through various ice packs, gel packs, etc by placing it or wrapping it around my hip and upper thigh. The ice helps the inflammation and pain by numbing the nerves. In conjunction with the ice, I also use a tens unit to deal with the pain. a TENS unit (Transcutaneous Electrical Nerve Stimulator) operates by attaching electrodes to the pain site and the stimulator sends an electrical signal to scramble the pain message that is being sent from your brain the extremity. The electrical impulses can vary depending on your tolerance (you can adjust the levels as needed. I definitely recommend purchasing one if you don’t have one!

  2. L at 12:45 pm

    I completely relate to your pain Katie. I, too, have been diagnosed with the unpredictable and debilitating disease known as CRPS. I applaud your positive attitude and strength of will to live life as fully as possible. I continue to navigate my new “normal,” using trial and error to pinpoint the triggers for painful flare-ups, and the measures needed to combat “the flames.” You wrote about using “ice for [your] burning leg?” Could you please elaborate on how you use ice? There are many varying opinions.
    Thanks

  3. Grace depaolo at 11:05 am

    You said it well, Katie. I have experienced chronic pain for the last 15 years. Lots of friends just don’t get it because I still dress nice and put on makeup. One “friend” said, “thank god I don’t have your pain. You really can’t do much, can you!”. At 65 I’ve traveled the world, had an art career, spent many exciting days and nights in Manhatten, see all plays, museum…..well, you get the idea. My life has always been exciting. I’ve made peace with my chronic pain and count my blessings that I’ve experienced so much. I take it in stride that I can’t do much socializing anymore. I’m grateful for the Internet. It’s all a positive mindset. I have a nice roof over my head, plenty to keep me busy and don’t have to work anymore. How much more can I ask for? God is good.