How much do your friends really know about your illness?

May 22, 2014

We’ve all had to face people who don’t believe that we’re as sick as we claim. In many cases, I blame them – especially when we’re talking about doctors and other medical professionals. However, I think that very often it’s we patients who are to blame. We don’t share the details of what we deal with because we don’t want to be seen as constantly complaining, or over-reacting, or because we’re embarrassed. Consider these two versions of a hypothetical conversation:

Version 1:

Her: Hey, what are you up to?

Me: Just cleaning the toilet.

Her: Do you want to join me to dinner tonight?

Me: I’d love to, but I already have plans.

Version 2:

Her: Hey, what are you up to?

Me: Just cleaning the toilet after last night’s IBS episode.

Her: What happened?

Me: It’s pretty gross. You probably don’t want to know.

Her: Go ahead and tell me.

Me: Well, I had some explosive diarrhea. I’m just so glad it stayed inside the toilet bowl this time! But it’s in areas that flushing won’t reach, so I have to clean it myself.

Her: I was going to invite you to dinner….

Me: Yeah, I’m probably not up for going out to a restaurant. Why don’t you come to my place and we’ll watch movies and chat?

Her: Great! See you tonight!

Do you notice something here? In the first version, I sound perfectly healthy: I’m cleaning the toilet and I have plans to go out, just like my friends. Nothing to worry about. In the second version I’m not complaining, but my friend now understands that I was recently feeling very ill, and that my day is about dealing with that. She doesn’t feel put-upon to listen to me complain, but she understands why I don’t want to go out to a restaurant. I’m not hiding anything, so I’m able to suggest a low-key evening and we can still spend time together. If I had instead said that I didn’t feel up to getting together at all, she would have understood why.

Some people will never believe what we deal with either because they’re too selfish to consider it or because they’re in denial. But most of the people close to us, the ones who love us and want us to be ok, have the capacity to believe us and understand, but when we hide things then we don’t give them that chance.

I am not suggesting that you always talk about every problem you have. That would allow for a balanced conversation. At the same time, I don’t suggest lying or hiding things, either. If someone asks how you are, what do you say? You could lie and say you’re fine, you could spend 20 minutes complaining about every symptom and the 10 different calls you made to the insurance company, or you could find the middle ground: you could state your problems matter-of-factly and then move on to talk about the other things in your life, even if they’re as mundane as cooking dinner or reading a new book.

There’s no one way to share information about an illness. You’ll have to figure out on your own what feels right. For now, start small: when someone asks what you did yesterday or who you’re feeling, try answering them honestly and see what happens. You just might find a bit more support when they know what you’re really dealing with.

How much do you share about your health problems? What do your friends really know? Please share in the comments so that others can learn about what works.

6 Comments | Educating, Isolation, Limitations, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

When even birthdays are overwhelming

May 16, 2014

The thing about being single is that I don’t have automatic birthday plans. When I’ve been dating someone, we’d plan a day together. Sometimes I went out with friends, but I always had that default date. But when I’m single, nothing happens for my birthday unless I plan it. Well, a couple years ago friends threw me a surprise party. But most years nothing happens unless I plan it.

I remember one year I gathered a bunch of friends from different social circles and arranged for us all to meet downtown for dim sum in Chinatown, and then to hang out for a while afterwards. That was a nice birthday. I would never plan something so high-energy now. Two years in a row I got friends together for dinners out. These days I’m not so fond of going out at night.

I thought about skipping by birthday this year. After all, I skipped New Year’s Eve, so why not skip my birthday? To be honest, I might have skipped it if it was on a weekday. With all of my friends at work, it would have been the perfect excuse. But with my birthday on a Sunday, it just seemed too depressing. I should really do something, right?

A friend is going to be visiting from out of town. I thought about doing something with just the two of us, but she has to head back home early in the day. I thought about inviting one or two other friends. And then I figured, what the hell, I’ll have a freaking party. Ok, birthday gods, you win!

Of course, I’m not up to anything high-energy. The party was going to be a bbq at my parents’ house while they’re away, but that felt like way too much effort. I wouldn’t have the energy to get the food and be the hostess and celebrate. It was overwhelming just to think about it.

So I downgraded it. Now it’s going to be an afternoon thing. We’ll just hang out. If the weather is nice, people can throw around a frisbee in the yard. If the weather is lousy (or just too warm for me) then we’ll hang out in the house and play board games, which I really love. Food will be simple and easy to prepare in advance: chips and salsa, cheese and crackers. My mother wants me to have a gluten-free cake, but I told her I don’t care about having a cake. The truth is, I’m already overwhelmed at the idea of hosting and celebrating at the same time. Picking up a cake that morning would just be too damn much. And I really don’t care enough to go to all that trouble.

I have a plan. A plan is good. It’s a start. Now I just hope I feel well enough to go through with it that day, and that’s impossible to predict.

3 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

Social Security Disability: a system that makes no sense

May 9, 2014

I’ve really missed writing! Unfortunately, I was busy dealing with a system that just makes no sense at all. That’s right folks, it’s the U.S. Social Security Disability Insurance (SSDI) system!

I had my social security hearing since I last wrote to you. For those not familiar with the process, it works like this: you apply for social security and almost definitely get denied. You appeal, and likely get denied again. You appeal again, and are assigned a hearing before a judge. This process takes more than a year. If the judge rules for you, you get your payments (in my case, not even enough to cover my rent, never mind food, gas, electricity, or medical expenses) and eligibility for Medicare, which isn’t the greatest health insurance, but it’s better than nothing (which is what you might have otherwise, depending on your situation.) If the judge rules against you, you don’t get payments, you don’t get Medicare, and your only options are to either walk away or start the whole thing over again. Ridiculous, right?

Oh, and I forgot to mention: if you don’t show up for any but the most exceptional reasons, the judge automatically rules against you. So if you get hit by a car and end up in the hospital, they’ll let you reschedule (with proof that you were in the hospital.) If you’re just in too much pain to show up, too bad, you lose. I get that they don’t want a bunch of no-shows, but when you’re dealing with ill people, reliability can be a problem. If it weren’t some of us might be, you know, working at jobs. Sure, you can schedule a hearing by phone instead, but that has to be done in advance, and my lawyer and others say it’s better to show up if possible. So if you don’t schedule a phone hearing months in advance, you better show up in person at the right time on the right day. They just give you a time and day, you don’t get to choose it, of course.

Mornings are tough for me. I never schedule anything that involves leaving the house before 11am when I can help it. It’s just too hard to get there on time, and I often feel lousy later on, too. So of course I had to leave at 8:30. Figures. And don’t forget that “not showing up” includes “not showing up on time.” So if you show up late, the judge automatically rules against you. But hey, no pressure.

So for a week I was nervous. I washed my hands more than usual. I tried to avoid being near anyone who seemed the least bit sick. What if I got sick? It’s been a year and a half since I first applied, so starting the application process over again isn’t a good option. Plus, if I didn’t show up for the hearing, my long term disability company (which requires me to apply for SSDI) could cancel my coverage. Yup, missing this hearing would make me screwed!

That wasn’t an option, so on top of the concern about the hearing itself, I had the added stress of worrying that something could happen to make me miss the hearing. And of course the hearing itself would be about me trying to “prove” that I’m really as sick as my doctors and I say I am. It was a shitty week.

But here I am, on the other side of it. I won’t know for a month or two what the judge’s ruling will be, but at least I made it through the hearing. I was nauseated beforehand, I was in extra pain that morning, and I don’t feel great about how it went, but at least it’s over. And now I wait….

5 Comments | Expectations, Fatigue, Frustration, Healthcare, Politics, Rants, Symptoms, Unpredictable | 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

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