The problem with Facebook when you have a chronic illness

May 13, 2014

Chronic illness affects us all in different ways. 10 years ago I was working, dating, and hanging out with friends. I was almost as active as most of my peers. 2 years ago I only left the house two or three times a week, or sometimes less. Some people are as active as healthy folks. Some people are completely housebound. Some people fall somewhere in between those two extremes. But we all have limits of one kind or another.

There’s a lot of talk in psychological analysis of social media about FOMO, which stands for Fear Of Missing Out. This isn’t a new phenomenon, but it’s more pronounced now that we can regularly see the wonderful and spectacular things our peers are up to on Facebook and other social media platforms. I now see pictures posted by people I would have otherwise lost track of years ago. There are children, pets, vacations, jobs, and so many other activities. There’s the occasional complaint about too much work, kids who aren’t sleeping through the night, or the morning’s commute. And of course there are the political and entertainment postings. That all sounds normal to most people.

The problem is, when you’re already feeling isolated and limited, seeing everyone else’s activities can be a bit jealousy-inducing. I’m happy for my friends. I truly am. But I’m also really jealous.

Worse than the jealousy, though, is having nothing to post yourself besides the generic entertainment and political postings. Sure, some people just read the posts and don’t post their own because they’re too busy, too lazy, or prefer their privacy. That’s just fine. But it feels different when the reason is that you have nothing new to post. No job, no travel, no kids, no relationships, no outings…. nothing. This is FOMO to the extreme, because we don’t just fear missing out; we really are missing out. And it feels like it’s obvious to others that we’re missing out, too.

If you have a chronic illness and are active, you’re probably still missing out on something, and it might feel really obvious to you when you see all of the postings by others. When you’re not leaving the house much or at all, you’re missing out on everything.

This is the point in the post where I’m supposed to tell you that it’s ok. There are more important things in life. It is and there are. But it still sucks. I won’t patronize you or myself by saying that we shouldn’t be upset by this, that there’s no point in comparing ourselves to others, etc. We know this and sometimes it helps and sometimes it doesn’t. Sometimes I read Facebook status updates and just feel happy for my friends. Other times I wish I could have joined friends at a concert or posted my own vacation photos. Sometimes I feel so lonely and isolated that I just avoid social media for a while. But inevitably I return.

I’m not offering a solution. I am only offering this one thing: you’re not the only one who feels this way. You’re not alone. And it’s ok. Go ahead, feel bad about what you’re missing. Then go do something fun for yourself, even if it’s something not considered Facebook-worthy, like watching your favorite movie. I’ll be here watching mine.

4 Comments | Expectations, Frustration, Isolation, Limitations, Rants | Tagged: , , , , | Permalink
Posted by chronicrants

Sliding backwards

April 28, 2014

Sometimes I feel like Sisyphus. I keep trying so hard to get better, and I keep having setbacks. And yet, I know I’m one of the lucky ones.

I’m one of the lucky ones because I’ve seen improvement overall.

So I’m frustrated and grateful, scared and excited, angry and glad, whipping back and forth between different emotions as my physical health changes. I’m so glad I was able to go to a family party yesterday and still feel ok afterwards, but I’m frustrated that I don’t feel up to going out to dinner with friends tonight. I’m glad that I’ll probably feel up to going to a doctor appointment tomorrow, but frustrated that I probably won’t feel up to doing laundry afterwards. I see a bright future, but I wonder if I’ll ever reach it. It’s like the carrot being dangled in front of me. Family, friends, my naturopath… they all say that one day I’ll grab that carrot, but no one says that it will still be crunchy and delicious. Maybe by then it will have gone bad. Instead of working and socializing and living a so-called normal life, I’ll only be able to work a bit and then be too sick to socialize. Maybe I’ll never really be able to date again. Maybe my dream of being able to actually give a solid RSVP to an event is nothing but that: a dream.

Two weeks ago I was feeling pretty good. I had been seeing a lot of improvement since starting a CPAP machine. I was on a new medication. Things were looking up! I was feeling better than I had in ages and I thought it would continue. The pattern was clear: 3-4 days of feeling great, 1-2 days of feeling crappy, and another day of feeling so-so. It wasn’t perfect, but it was a great sign that things would continue to improve. And then that pattern ended. I don’t know why. Technically, nothing changed. I thought I was in transition towards a better stage of health but maybe that wasn’t it, afterall.

I am trying to focus on the positive. I feel so much better than I did two years ago. I feel better than I did even 6 months ago. And I guess that’s the difference between me and Sisyphus: so far, I haven’t had to start over in this most recent journey. I slide backwards, but not completely. That means that the next time I improve, I’m starting from a higher point. It’s not perfect, but I’m grateful for it.

So right now, as the dark clouds are rolling in and my seasonal affective disorder is kicking up, as my body aches and the fatigue is ever-present, as I wonder if I’ll ever reach that carrot of a future, I’m trying very hard to see the last few years for what they’ve been, and be glad that, at least right now, I seem to be done with them.

 

10 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The myth of a healthy youth myth

March 4, 2014

I can’t believe I had this conversation again today. The details vary, but it always goes something like this:

Me: I want to get healthy while I’m young enough to enjoy it.

Other person: Well, the “healthy youth” thing is really a myth. Not everyone feels good, and people get sick, and we’re busy taking care of kids so we can’t go out much anyway. And lots of older people feel great and are active, so maybe you’ll be one of those. Besides, we’ll all be feeling like you one day anyway, and then we’ll all be on the same page.

Yes, people really say this shit. Ok, let’s start with the first thing: the healthy youth myth. That myth idea is a myth itself. I’m not saying that people without chronic illnesses are healthy all the time. They might get the flu or headaches or whatever. Some days they just feel like crap. Sure, I get that. But the point is that they recover! They don’t continue to have the flu for the next 30 years.

Next, just because you use your energy-filled, pain-free days to do things other than jet off to Paris and go to fancy clubs, doesn’t mean you aren’t enjoying your youth. Do you have any idea how many of us would like to have kids but don’t have the energy to take care of them? So while you might say you can’t party because you have kids, others of us say we can’t party OR have kids. See the difference?

I’m not suggesting that every 20- and 30-something parties 7 nights a week. But I’m suggesting they can go to parties on Saturday nights. I’m suggesting they can attend a lecture on Tuesday evening. I’m suggesting they can take a shower and cook a meal without feeling like shit.

And yes, some older folks feel good and are active. But if I feel like shit at 30 and 40 and 50 and 60, do you really think I’ll be skiing and skydiving and traveling and going out with friends at 70 and 80? Do you know any of those active elderly? Maybe it’s just a coincidence (I really doubt it) but all of them were healthy active in their youth and in their middle age and then they continued to be active. You can’t expect an unhealthy body to magically get healthier as it ages. The chances that I’ll feel better at 80 than at 30 are really incredibly slim. And besides, at best I could feel good compared to a typical 80-year-old, but I’ll never get the chance to feel as good as a 30-something again!

And sure, maybe one day my friends will all be tired and in pain with arthritis. But they’ll have already had all of the experiences of youth! That’s the point! Yes, maybe one day we’ll all feel equally miserable. (Though to be honest, I think I experienced more pain and fatigue at 32 than my grandparents did when they were 80. At 80 they were still hopping on planes and traveling. Not me. They still went out with friends all the time. Not me. Just saying.) But when we stiffly sit in our chairs with our achy joints at 80, they’ll be surrounded by kids and grandkids if they chose to have them, and they’ll remember all of their fun adventures and activities from when they were younger, while I’ll remember days of my life seemingly wasted sorting through medical records and insurance forms, feeling lousy, watching tv and ready and missing out on parties and outings that I really wanted to attend. Yes, I’ll have fun times to remember, but not as many. Hopefully I’ll have let go of the anger and sadness of not being able to have children, but maybe not.

So to all of you out there who spout the myth of the healthy youth myth, I’m telling you it’s not a myth. Spend just two months pretending you have the flu. Leave your job, turn down every invitation you’re offered, don’t accept invitations. Now tell me if you feel like your old life allows you to be active or not. I’m guessing you’ll feel pretty damn healthy by comparison. If you’re tired because you stayed out at the bar too late, go to sleep earlier next time, but don’t pretend you have it so tough. At least you have a choice.

I was going to give an update today on the doctor planet orbit, but I was too upset. So please accept my rant as just that (a rant), and I’ll resume my normally unscheduled blogging tomorrow.

4 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Feeling jealous and alone

March 3, 2014

I know that jealousy is a useless emotion. I’m already working to change what I can, and a lot is out of my control, so there’s no point in being jealous. Yet I am.

You’d think I’d be jealous of my healthy friends’ good health, but I’m not. Ok, I am a little bit, but for the most part I’m past that. I know that I can’t have that, so I’ve let it go. Sure, I get jealous of their good relationships with their spouses, their kids, their pets – all things I could have but don’t. But what I’m really jealous of is my friend L’s situation.

You see, L also has chronic illnesses. She has chronic pain and other symptoms, so we can really relate to each other. What I’m jealous of is that she’s never had to handle her illness or it’s results alone. She moved in with her then-boyfriend (now-husband) as a teenager, and he’s always been there to take care of her. I, on the other hand, have been alone for the worst of my health problems. My parents were very supportive when I lived with them, and then I had tough years where I could manage alone. And now? Well, now I could move in with my parents if I had to, but for many reasons I’d rather not do that.

I’m lucky. I know I’m lucky. I’m able to live on my own, and that’s huge. And I’ve been able to go to college and work, which L never did because she was much younger when she became disabled. But still, I’m jealous that she has someone to help her out. Her husband earns a very good salary, so she can afford to have someone else do her laundry, to get medical treatments that aren’t covered by insurance like acupuncture and naturopathy, and to get massages, all without worrying about the cost. I either can’t do these things, or I pull money out of savings for them and then stress over them. She gets to have pets. She freely admits that she couldn’t care for them herself, and in addition to loving them, she talks about how much they help her. If you don’t know what I’m talking about, check any search engine and you’ll see the many articles that talk about the physical  and emotional benefits of having pets. I know they’d help me, but I can’t afford them or take care of them. Beyond the money, L has help and support at home. Her husband helps with the chores and does all of the cooking. He comforts her when she feels especially sick. He helps her make decisions about her health. Oh, what I would give to have that.

I was thinking about this today on the way home from the grocery store. I managed to do the shopping ok, but as we all know, it doesn’t end there. I was wondering how I’d manage to get the groceries into the house, and I thought about L, and how her husband carries in the groceries. And after buying everything, I was tired and needed to rest, but dinner still had to be cooked, and I thought about how L’s husband does their cooking. And I thought about how on days like today, when I don’t see anyone else except at the store, and other days when I don’t see anyone at all, it would be so nice to have a spouse come home and have a conversation with me, and give me a hug.

Everyone’s life is different. I know that. I know that I have a lot of things that L doesn’t have. I know I have a lot of things that many other people don’t have. Still, some days I get jealous, and today is one of those days. Some days, I just wish I had someone else to help me through the tough days and celebrate the good days so I wouldn’t feel so responsible for everything, and so alone.

10 Comments | Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Support | Permalink
Posted by chronicrants

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