I miss my friends

March 30, 2015

The other day I wrote about my many medical appointments this month. There was a time when I’d squeeze an appointment in before work, or go during an extra-long lunch break (which I’d have to make up for after work hours.) Those days are long gone. Now I don’t have to worry about missing work, but I do have to worry about missing life.

As I’ve been feeling better lately, I’ve been spending more time with friends. What a treat that’s been! I do better during the day, so I don’t go out much on weeknights. But I see many friends on weekends, and I have a lot of new friends who also don’t work due to chronic illness, so I hang out with them on weekdays. Seeing one or two friends on weekdays each week has been wonderful! Unfortunately, with so many medical appointments, I just can’t manage it.

Today (Monday) I’m doing things around my apartment that need doing. They really need to be done, but I’m also resting. I have an appointment early tomorrow that I need energy for. And one of the things I have to do today is to prepare for tomorrow’s appointment: I need to prepare all sorts of notes so I don’t forget anything when I’m in the office. Tomorrow I doubt I’ll do anything besides that appointment. Wednesday I hope to do some clothes shopping. I don’t have any bathing suits that fit and summer is right around the corner. I’d like to see friends, but I know I won’t have the emotional energy for it after Tuesday’s appointment. Still, shopping drains my physical strength and causes extra pain, so I always need a full day to recover afterwards. That’s what Thursday will be: a recovery day. And at some point Thursday (or sooner) I need to prepare notes for Friday’s medical appointment. After Friday’s medical appointment I’m going to a Passover sedar with my family. I’m not religious, but it means a lot to them, so I go. I’ll probably have to go directly from the medical appointment. Saturday is a nephew’s birthday party, so as you can imagine, Sunday will be another day to rest. And BOOM! The week is gone!

Last week was pretty similar, and I think the following week will be, too. And of course, I know I’m lucky – a year ago I wouldn’t have been able to manage so much in a week. This is huge for me! Still, I miss hanging out with friends. I miss socializing. I like having quiet time to myself. I don’t get bored easily. I can happily spend a day reading and puttering around. But like many humans, I’m a social creature. I live alone, so on the days I don’t leave the house, I don’t see another human being. Days like yesterday, I might go out and see strangers in passing, but I don’t have any real conversations with anyone.

March is a gray month in Boston. As I write this, the skies are dark and there are some light snowflakes coming down from the sky. I have no desire to go for a walk (which I’ll have to do anyway) or to go outside. Yet, a little company would be lovely.

Like I weather, I know my current social situation is temporary. So I’m trying to make some plans with friends for a few weeks from now. At least that way I’ll have something to look forward to when this ridiculous string of medical appointments is over. And I’m just grateful everyone understands why I’ve disappeared for a bit.

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.

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