When Your Medical Life Replaces Your Social Life
A friend of mine recently posted an interesting quote on Facebook. Now that’s certainly nothing to write home (or write a blog) about – every day we see dozens of quotes meant to make us think introspectively for a second and then keep scrolling. Usually we skip the introspection and just scroll on. Occasionally we comment and move on, but the point is that no matter what we do, we often scroll past it and don’t give it a second thought. I made a comment – half-joking/half-sarcastic and scrolled on, as we’re supposed to do.
“You are the average of the five people you spend the most time with.”
OK, then that’s my husband, my mom and probably three doctors. #ChronicLife
Ha ha ha…it’s funny ‘cause it’s true.
But that’s precisely why it’s not so funny.
I tried to think about it more, and come up with a real answer. Surely there are people I spend more time with than my doctors…right? I mean…I do see a lot of doctors, but there has to be more than that…doesn’t there?
When I couldn’t think of anyone else I spend time with, I went to look at my calendar, hoping I’d find I have a real life, with real friends and real activities.
Eh…not so much. It’s actually been a busier month than usual, though, so there was more than I expected:
– April was Sarcoidosis Awareness Month, so I saw my sarc warrior friends at two different awareness events. There’s one couple I got to see at both events, but this is rare – I don’t know if I’ll see them again until next year, so they don’t get bumped up to the “spend the most time with” category.
– I saw my mother-in-law twice, for her birthday and early Mother’s Day…but I may not see her again until Hanukkah/Christmas, so she doesn’t get bumped up either.
– I saw my niece for a special Geeks’ Night Out event, but likely won’t see her again before our next geek-out in December.
– I saw an old friend who was performing in the city…but I haven’t seen her in about seven years, and it may be years before I see her again.
– I did have dinner with my husband’s friends a couple of times and met them in the city for a show once. Chances are I’ll probably see one or two of them every few weeks…so perhaps they could make the list. (Yep, I see my husband’s friends more often than any of my own.)
Looking at that month in total, it seems like I’ve been pretty busy, with a nice variety of friends and family – in fact, I’m tired just looking at the list. But there are a couple of things to keep in mind: a) a month like this is highly unusual for me and b) then I look at all the red appointments on my calendar (yes, I color code my calendar, don’t judge me).
In the past month, I’ve had 13 medical appointments. 13. In one month. Therapy, office visits, tests, follow-ups…not to mention all the times I see my local pharmacist, who knows me by name because I’m there so often. That’s more than all the others combined. And this is a typical month for me, when things are going “well” (a relative term for people with chronic illnesses). Every few months, a new problem pops up (or an old one gets more serious) and I’ve got to add in a few more doctors.
Though I mostly knew this already, seeing and responding to my friend’s post made me realize just how much my medical life has replaced my social life. Like so many people with chronic illnesses, I don’t get to see my friends much, for a number of reasons:
1. Scheduling is difficult, as I have to work around not only these frequent appointments and a few errands (food shopping, etc.), but around the rest/recovery time I know I’ll need, which could be hours or days after each outing.
2. Far too often I have to cancel plans I’ve made because the pain, stiffness, fatigue and/or other symptoms are too severe for me to leave my home.
3. Some people stop making plans with me because they know I may not be able to keep them, but don’t fully understand (or care?) why.
4. Since I’m not working anymore, I’ve lost all the social opportunities that stem from an office job, like happy hour after work or celebrating the big events in one another’s lives.
5. Many “friends” have faded away, as out of sight becomes out of mind.
Some of this, I understand. Even without chronic health issues, it’s common to lose touch with people as our lives take us in different directions: when we get married or have children, when we change jobs or move to a new town. In those situations, we develop new relationships to replace those lost. But when we’re sick, we don’t have new mommy and me groups, new coworkers or new neighbors. We sit home, often alone, missing our old lives.
While it can be extremely lonely at times to live with a chronic illness, what is most important for all of us to realize is that we are not alone in this journey. When we are unable to get out of the house (or even out of bed) because of pain, fatigue or other symptoms, if we can get to our laptops or cell phones, we can find more than just another quote to scroll past. Through online support groups, chronic illness blogs and social media, we can truly connect with others who are living with similar issues and challenges – people who can understand and relate on a level that only those who have been there really can. Through the magic of the internet, we can develop genuine friendships to cherish as much as those that have grown more “naturally” in person over the years.
This post originally appeared on Float Like a Buttahfly.
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I’m a glass-half-full kind of girl. More than that, really – I’m the girl who’ll point out that if it’s not full, you don’t have to worry about spilling your drink every time you pick it up! Over the past few years, I’ve been diagnosed with a number of chronic, invisible, and immune/inflammatory illnesses. Still, I do the best I can to stay positive: my blog (floatlikeabuttahfly.blogspot.com) is my way of showing those with similar experiences that they are not alone. We may not be able to defeat our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together. It’s my mission to make a difference in people’s lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone … and that someone could be you!
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