Being sick is more than just being sick. Suddenly, your life has countless of unexpected limits and one of those is on your social life. Any one who is chronically ill, or close to someone who is, knows that your calendar is filled mostly with doctor appointments, call back reminders and few tentative social events that you’ll likely be canceling on 40 minutes prior to. No, the chronically ill aren’t lazy or anti social; they’re just sick and quite often the uncontrollable spikes come with little to no warning. On the outside you end up looking like an antisocial flake, while really you’re lonely and wish you could put on your heels and go dancing.
Some people are luckier than others. I’m on of those. I have the fortune of sharing life with people who are very compassionate towards me in this regard and take with great importance each small attempt I make. Most people though don’t understand this and it results in alienation. I’m not entirely exempt from this either. I’ve been unable to make an old friends birthday celebration for the 3rd consecutive year, and while she still invites me (sweet of her) she probably does so with little expectation. It has been a very long time since I’ve been able to hang out with friends. The past year has been the worst since diagnosis and it has real reflected in my social life. I can bare;y go out on dates with my husband even.
As you can imagine, it’s extremely isolating. But I got lucky. In the past three years I’ve managed to make some amazing friends that without, this disease would be far more difficult to navigate. A few people from a support group have made such a vast difference in my life that I wouldn’t dare imagine life without them at this point, even if I went into remission and didn’t have another day sabotaged by UC.
Early on in my diagnosis I searched the Google play store for an app that would help me track the day-to-day details of my individual disease activity; and I found a great one, GI Monitor. There was a “socialize” tab that I generally ignored until curiosity took over and one day I started exploring. Reading the open forums showed me that these people were mainly kind and helpful so I proceeded to introduce myself. That introduction has led to some incredible relationships that I never would have imagined existing. At first they helped me with my UC by sharing their experiences, but a few of these relationships evolved to something far past a person to chat with when I’m feeling ill. A few of my dearest friends and supporters were found here and I even met my best friend on this app.
It sounds so silly that I can feel so much love to people I met online (a few in person, and hopefully more in the future). But, it isn’t. We share much more than diagnoses, we share understanding, jokes, compassion, and love.
Today was such a difficult day for me. The past two months have emotionally collapsed on me today and my dear friends reminded me how to smile and stay strong. I miss going out and sharing dances, drinks, and food with my friends. I miss shopping with someone who advises what I should buy because she intends on borrowing it later. But I’m not short on love; I’m not short on people who will hold my hand when I’m feeling most alone and, for them, I’m so grateful.