What should I tell my neighbors?

January 12, 2017

Usually disclosing my health status isn’t a problem for me. Usually. For some reason, this time it feels different.

After writing this blog for a while I realized that talking about this stuff felt freeing. I needed that. So I began to open up in real life. Bit by bit I felt the difference. The more I was open, the better it felt. It wasn’t about making an announcement, but simply not hiding anything. From time to time I’d meet someone new and I’d mention I had “health issues” and the rest would come out naturally. Easy.

Then a few weeks ago I moved. Normally that wouldn’t change a whole lot, but this is a very friendly and huge apartment complex. I have already met many of my neighbors. Sometimes we say a quick hello. Sometimes I pet their dog but never learn their name. Sometimes we exchange pleasantries. But I’ve had real conversations with a few of them. I love it! It’s so great to be friendly with my neighbors. Of course, the downside is that it means I have a lot to share with them and I’m not sure how to do it.

One neighbor offered me food. I said thank you, it looks great, but I have Celiac. That opened up the conversation around Celiac, but not around my other health problems. It was a start. Another neighbor talked about the benefits of living on the second floor, so I mentioned knee pain that prevents me from doing a lot of stairs. Now she knows about my knee pain, but not about the rest.

Another neighbor was talking about dating, and we compared online dating apps we’ve tried. I mentioned dating women. Coming out as bi is a lot like coming out as disabled or having a chronic illness. I feel like I shouldn’t have to announce it, but people assume I’m straight/healthy if I don’t say anything.

So far, all of these conversations have gone well. There’s been no negativity. Still, as I’m making many new friends and acquaintances all at once, I’m wondering how much to share.

I have already decided not to tell anyone that I’m in one of the “affordable housing” units. Or that I’m on disability benefits. Or that I’m on food stamps. Those things all come with assumptions and stereotypes that I don’t want to deal with right now. If I become friends with someone then I might tell them, but until then, I’m keeping quiet. Besides, even if one person is cool with it, they might be a gossip who tells others, and that would be a problem.

So I’m not telling anyone about my financial arrangements, but that doesn’t mean I can’t tell them about my health. The two aren’t always related. I was disabled to a lesser extent back when I was working a full time job.

This isn’t something I want to hide. But I also don’t want to be known as “the sick one” or “the one who is always complaining about her health” – we all know that even when something is simply stated as fact it’s often heard as a complaint – or “the one with all those health problems.” I want people to know me as me. The problem is, these health problems are part of me.

Also, I need to be realistic. At some point I will ask a neighbor to help me with something that a “healthy” person can typically do, and they will wonder what’s wrong with me. I might as well get ahead of that.

Disclosure has to be decided in the moment, on a case by case basis. I know that. Still, it’s hard not to think about how I should approach this. Maybe I think too much, but it’s served me well so far. And so I am being very careful with my approach. Until the day I get fed up and just start announcing it to everyone, because I know that sooner or later, that will happen too.

Have you ever found yourself making a lot of new friends at once, but not in a single day? How do you handle whether or not to disclose, and how much detail to share?


I’m moving!

December 21, 2016

I can’t believe that in 24 hours I will be living in a new apartment. I have been in my current place for over 10 years – much longer than I’ve been writing the hundreds of posts on this blog. Wow!

A lot has happened in the last 10 years and maybe I’ll look back over them another time. But at this moment, I’m looking forward.

I’m looking forward to my gorgeous new kitchen with the island in the middle, granite counters, beautiful appliances, and open feel. I’m looking forward to the comfortable living room, the lovely patio (my first ever outdoor space!), and my 2 bedroom closets. I’m looking forward to the apartment complex’s gym and book club. I’m looking forward to off street parking. I’m looking forward to meeting my new neighbors and their dogs. I’m looking forward to getting a dog of my own! I’m looking forward to living in a place with no stairs! I’m looking forward to peace and quiet and a view of trees.

Yes, there are things I’ll miss about my old place. The many windows, lovely open views, and easy walking to lots of great things will be missed. I’ll miss being able to take the T (our subway) whenever I want to (and feel up to it.) I’ll miss having a lot of activity around. I’ll miss having friends without cars visit me (the new place requires a car.)

There are things I’ll miss but so many more that I’m looking forward to, and I’m focused on those.

I’m also excited and proud of myself that I managed to prepare without getting *too* stressed out or fatigued or pained. Thanks to some new supplements I’m feeling pretty good, I’ve been careful to pace myself, and my wonderful mother has been incredibly helpful. Not only did she come over twice to pack boxes in the last month, but now she’s staying over at my place for the two nights before the move to help me with final preparations. She’s an angel, and I’m super lucky to have her in my life.

And with that, I’m signing off for a few days. Hopefully I’ll have internet access at the new place right away (but the cable company has been difficult about that, so we’ll see.) I’ll be busy alternating between unpacking boxes and getting lots of rest.

See you on the other side!


Difficult elections and self-care

November 10, 2016

For the past 2 days, a lot of my friends have been writing and posting on Facebook about self-care. These last 2 days have been incredibly stressful for many of us. We’re scared, we’re uncertain, we’re worried. And that’s precisely why we need to take care of ourselves. All of us.

But when you have a chronic illness, self-care takes on different dimensions. And in some ways, I think it makes things easier for me, because I already know what to do.

When I was first diagnosed with an autoimmune disease, the doctor told me to avoid stress. I laughed. Oh wait, was he serious?

Over the years, though, I’ve learned how to do it. It’s not that I completely avoid stress, but I manage it better. I’ve learned not to sweat the small stuff as much. When I do feel stress, I know what will calm me. I address issues head-on so they don’t nag at me. I take deep breaths. I distract myself. I put things in perspective. And generally, it works.

I also know what to do when it comes to physical self-care. I know that I need a lot of sleep and that I need to eat certain foods while avoiding others. I know that I might need to take extra supplements or raise the dose of a medication.  I know how to rest while awake.

It turns out, I know a lot more than I thought I did! And I bet you do, too.

This week is more stressful for some people than for others. But we all experience stress from time to time, so it’s important to learn how to read our bodies and to figure out what will work to counteract that stress.

I am watching my friends cry, hug, and attend vigils. I did the first two. I can’t do the last. The vigils would help me emotionally for sure, but not physically. And on balance, it’s better to skip them, even though I’d really rather attend.

Last night when I found myself crying alone in my apartment, I texted a bunch of friends until I found someone who could talk. We had a long chat on the phone and in the end, I felt much better. Today I visited with another friend and got great conversation and a few good hugs. I don’t usually hug people during flu season but again, on balance, it was worth it.

We all need to find our balance.

I want to believe everything will be ok, but I know it won’t. As a queer person, I see difficult times ahead on many levels. As a Jew, I see anti-semitism increasing already. As a woman, I worry about an increased risk of sexual assaults, not to mention further legislation that affects my body. And as a chronically ill disabled person, I worry about losing my health insurance and my disability benefits. As a person, I worry about the future of our country and the hatred that this election has bred. Among so many other things.

So that is why I am about to step away from my computer, put on a happy, silly movie, and knit. Because for me, that’s the perfect form of self-care.

How are you taking care of yourself? What works for you to handle stress? Please comment and share!

As a final note, I want to say that I’m not looking to start a political debate about how the election turned out. This is about handling feelings and stress. That’s all. Hateful comments will be deleted, because that’s part of self-care, too.


Feeling guilty for feeling better

October 26, 2016

These friends are some of the only people in my life who knew me before the symptoms began. They understand more than most. But some things are still so hard to explain.

We were sharing all sorts of things, and I started to talk about my support group, and some of the emotions that come up when I’m there. I talked about many things, but it was my talk of feeling guilty that they latched on to. They tried to convince me that I shouldn’t feel guilty.

Easier said than done.

The thing is, I know I shouldn’t feel guilty. I know it in my head, but my gut feels guilty anyway. One friend put it best: it’s like survivor’s guilt. Why should I have improvement when someone else doesn’t? Still, they didn’t truly understand why I would feel guilty.

But I do.

I look around at my friends and acquaintances who are sicker than me, or who are in more pain, or who have a worse prognosis, and I feel guilty that I’m doing better. When I was much sicker just a few years ago, I sometimes resented and often envied the people whose health had improved. Now I’m one of them. And it’s not because I worked harder at it or am more deserving. Sure, I worked my butt off, but a lot of it is luck. Some people have illnesses that will never improve. I was lucky to not be one of them (though for a while I believed I was.)

I will never be completely healthy. I don’t expect healthy people to feel guilty around me. But I do feel guilty when I can carry something that a friend can’t, or I can go to an event that they can’t. And I’m jealous when a friend with chronic illnesses can do things that I can’t.

It’s a process, though. I have had to deal with many difficult emotions surrounding these health issues for most of my life. Over the years I have dealt with many of them. Yes, I need to deal with the guilt, but it’s ok that it will take some time. It’s ok.

I appreciate my friends’ intentions. They want what’s best for me, and they feel that doesn’t include feeling guilty for being less ill or less disabled than someone else. And they’re right. But it’s not that simple. I need to work through the guilt in my own time. And I know I’m not the only one.

I’m sure others feel guilty at times, too. Are you one of them? It would be awesome if you would share your own feelings around guilt in the comments. I think I would really benefit from hearing about other people’s experiences. Sometimes knowing I’m not the only one going through something can make all the difference in the world.