I need help but I’m not helpless

February 13, 2017

Maybe it’s because I have a disability. Maybe it’s because I ask for help. Maybe it’s because I’m a woman. Maybe it’s all 3. Whatever the reason, it’s irritating.

It’s winter in Boston. Winter in Boston means snow on the ground. Not every day, but enough of the time.

2017-02-12 14.06.26.jpg

It’s beautiful. It’s picturesque. And it’s a pain in the ass.

I love the snow when I’m indoors, but then I need to go out. It’s slippery, and I’m terrified of falling and further hurting myself. I’m not steady on my feet, so a fall is more likely. I need help shoveling out my car due to my back and wrist pain. Suffice to say, it’s difficult.

Luckily, friends and strangers have been kind over the years, and in my new home, that hasn’t changed. Folks have helped me shovel out my car, and for that I’m grateful.

What I could do without is the “explaining.” Today a neighbor helped to shovel out my car while I cleared the top, which thankfully I’m still able to do. It was really sweet – we’d never even met before. I was really appreciating his efforts. Then he told me to “try moving back a bit, don’t gun it, if you get stuck you’ll want to…” and he proceeded to tell me how to back out of the parking space. I’d already told him I’d grown up here and lived most of my life here while we chatted about Boston winters. So why did he think I couldn’t back out of a parking space in the snow (if you’ve never done it, yes, it’s tricky. But once you’ve done it for 20+ years, you usually know what you’re doing.)

The other day it was someone else telling me how to back out of a space. A couple weeks ago, someone warned me as I got in my car that the roads would be getting slippery soon. What the $%#@?!? I learned to drive in this stuff back in the ’90s! I know how to tell when roads are getting slippery, for crying out loud.

I need help. That’s true. I won’t deny it for a second. But I’m not entirely helpless. There’s a lot I can do and there’s a lot that I know. Driving in the snow is one of those things. So I wish people would stop condescending to me.


Because I have chronic illnesses too

June 9, 2016

I have a problem setting boundaries. I know this, and I’m working on it, but it’s still a problem. The thing is, I like helping people, and that sometimes gets in the way.

Part of it is altruistic – I like seeing others benefit. Part of it is selfish: when I feel like there’s so much I can’t do in my life, it feels so good to do something that others find useful. But whatever the motivation, I have limitations, just like anyone else. I have limitations of time, ability, and energy. But on top of those, I also have limitations because of my health.

Lately this has come up a few times, and I’m handling it poorly. I know I could do better, but I’m not sure how.

We all have differently limitations and abilities, and that includes those of us in the chronic illness community. One person has more energy, another can climb stairs, another can walk more, another has greater cognitive function. It’s easy to forget that those abilities don’t preclude other limitations. I’ve been guilty of it myself. I see someone who walks a lot, and I forget that while they don’t have fatigue, they do have pain, for example. And now I’m on the receiving end of that.

I’ve been volunteering to help people in my chronic pain support group with a few things. I want to help, but I also have to be careful of my own limitations. I try hard not to commit to doing more than I can reasonably handle. The problem is, sometimes people ask for more. And that’s where the boundary issues come in.

Several times lately, people have assumed that I would do more than I had offered to do. I think they see me having certain abilities, and they forget about my limitations. Then when I say no, they ask why.

I offered to teach an informal class on using Facebook. There are so many great Facebook groups for people with all sorts of chronic illnesses, and I’d even set up a Facebook group for our support group. I knew a lot of people struggled with it, so offering a lesson seemed like a good idea. The problem was that several people said, “I can’t make it to that lesson, so when else can we meet?” I was stunned! I couldn’t give private lessons to everyone! Just that one class was exhausting. I didn’t leave the house for two days after that. But no one saw that part.

Finally I sent around an email saying that I’d be happy to give private lessons on a schedule that worked for me if people wanted to pay me. That ended most of the discussion, though one person still said she couldn’t afford to pay me but still wanted to meet because she needed help. I get that. I often need help that I can’t afford to pay for. So I don’t do it. I simply can’t help so many people. It’s not within my abilities.

I’ve been doing a lot of other tech support for the group. One person asked me to do some things and I finally said no, but that I’d be happy to show her how to do it. She asked why I couldn’t do it. I finally was direct: “Because I also have chronic illnesses and I don’t have the energy for it.” She said she’d find someone else to help.

I wasn’t trying to be rude or difficult or uncooperative. But I think people forget that doing seemingly easy things, like typing into a computer, can be downright exhausting for some of us. It can be painful for others. For some, it’s both. And just because I can do 10 things, doesn’t mean I can handle 11. Just because I can leave the house for 1 lesson doesn’t mean I can handle 5.

Many of my friends with chronic pain and chronic illness have visible illnesses. Mine isn’t visible unless you really look. You might notice a wince, a limp, or a stumble, but most of the time, I look just fine. So in some ways I understand why people forget and expect more of me.

Then again, when it’s someone with a chronic illness who asks me why I won’t do something extra, I just want to shout: BECAUSE I HAVE CHRONIC ILLNESSES TOO! JUST LIKE YOU!

Do you encounter this? How do you handle it? Please comment and let me know your experience!


Having a chronic illness isn’t brave

June 3, 2016

I have seen many brave things, either personally or on the news. I’ve even done a few myself. Having a chronic illness is not one of them!

I hear it all the time, and I’m guessing you do, too. It’s some version of “You’re so brave to deal with all of that!” or “She’s so brave to be in that wheelchair.” Oh really?!?

The last time I checked, bravery had to do with making a choice. You make a choice to put someone else’s safety above your own. You make a choice to do something scary. That’s brave. Depending on the situation, it might even be admirable.

But I didn’t make a choice to have chronic illnesses. Most people don’t. They don’t make a choice to use a wheelchair or walk with a limp or lose their vision. These are the realities of our lives and we deal with them the best we can, but we don’t chose them.

The argument then is that I’m brave for the way I handle it all. Again, I must ask: oh really?!?

What are my options? Yes, there are other ways I could handle this. And let me tell you, it wouldn’t make a difference. I’ve been called brave for putting on a smile and pretending I’m fine. I’ve been called brave for crumbling and saying that I feel like I can barely manage it. I’ve been called brave when I look completely healthy. I’ve been called brave when I’m in a wheelchair and the pain shows clearly on my face. It doesn’t matter how I handle my illnesses and their symptoms, at some point someone uses the B word.

You might wonder why I care. And the truth is that mostly I don’t. Most days I don’t even think about it. But in the moment when someone calls me brave, I bristle. When I see someone else called brave for simply being, I bristle. It bothers me because I don’t want to be put on a pedestal. I don’t want to be thought of as special or different. I want to be seen and recognized for who I really am and for what I really deal with.

This shit is hard! And I’m not special. I have to deal with it the same way anyone else would. Saying I’m brave implies that I have some special skills or personality trait that makes it easier for me to handle everything. “What a difficult thing to deal with, but she’s so brave, look how well she’s handling it!” No, I am not handling it in any special way because I’m brave. I’m handling it the best I can because that’s all any of us can do. Because that’s what I’m sure you, dear speaker, would do if you were also in my situation.

I look around the room at my many friends with chronic illness. Some have had dozens of surgeries. Are they brave because they had dozens of surgeries they never wanted? Some have kids. Are they brave because they had kids? Some weren’t able to have kids. Are they brave because they weren’t able to have kids? Some have jobs. Are they brave because they have jobs? Some can’t work. Are they brave because they can’t work?

Or are they all just doing the best they can?

Because really, what’s the alternative?

But the worst part of all is that sometimes, in a small part of me I don’t like to admit to, I feel proud when someone calls me brave. Because in that one small way, it’s a tiny bit of recognition of just how hard I work to get through each day. And maybe that means I’m a bit brave after all?

How do you feel when someone calls you or someone else with chronic illness “brave”? Do you like it? Does it bother you? Please comment below!


The futility of “You get what you pay for” in healthcare

May 15, 2016

It started as a normal health conversation. I was talking to someone I knew who just got her license (like a prescription) for medical marijuana. She was talking about how great her doctor was, and how I should see him.

I had just started the process to get a license myself. I pointed out that I had already seen a doctor and I wasn’t about to see another. She said I should see hers when I have to renew my license (in 6 months, per state law.) I pointed out that my doctor is cheaper. And that’s when she said it.

You get what you pay for.

I was stunned. First, that’s obviously not always true. My smartphone, for example, was one of the cheaper ones out there, but it’s been running perfectly for 2.5 years. I have plenty of friends with phones that cost twice as much that haven’t lasted as long, or with shorter battery lives. More expensive is not always better.

But more than that, she knows about my financial situation. So even if she’s right, why would she suggest that I spend an extra $100-200 per year unnecessarily? How insensitive!

To be fair, I don’t think she fully understood what she was saying. She became unable to work before she ever reached the age to work. But at a young age she also moved in with the man she later married. He has a good job that easily supports them both. Funds aren’t unlimited, but they take the occasional trip overseas, have 2 dogs, live in a nice apartment, and can afford extras that help her health-wise like massage appointments and laundry service. That’s the only adult life she’d ever known.

So she doesn’t know what it’s like to know that every penny you spend is being pulled out of limited savings. She doesn’t know the fear that if you spend too much, you will run out of money, and then what?

I shook off that comment. I was too surprised to coherently answer, and I knew it wouldn’t matter anyway. Still….

You get what you pay for.

Maybe she’s right? I’ve thought about it a lot in the last two days. Maybe I should have seen that other doctor. In theory, I got what I needed: the license. But her doctor did sound helpful. He gave her personalized advice: which strains of cannabis to buy, how much to take, etc. Then again, it’s too soon to know if his advice was accurate. Maybe it was, and maybe it wasn’t. Maybe my doctor’s more generalized advice will turn out to have been more useful.

In 6 months I will need to decide if I should see the same doctor I already saw, or try hers. I’m not sure what I’ll do. What I do know is that line rubbed me the wrong way.

People are constantly offering suggestions of things that will help my health: acupuncture, massage, Alexander Technique, etc. Many of these will and have helped – but who’s offering to pay for them? No one!

So from now on, I think that will be my response. When someone says, “You get what you pay for” or “You should try X” (and of course X isn’t covered by insurance) I’m just going to say:

Are you offering to pay? Thanks! I’d love to try that!

What about you? Have you encountered comments like these? What do you say? Please comment below! I’d love to know!


My fertility isn’t your business

April 29, 2016

Why do people keep trying to convince me that I’m able to have kids?

Ok, I know the answer. It has to do with them wanting to give me hope, them not wanting to see someone give up on something wanted, them not wanting to admit that they might also fail to have the children they want… them them them. It’s not about me.

But it still bothers me.

When I was in my late 20s I decided that I didn’t want to pass on these genes. I had an entirely unhelpful diagnosis of Undifferentiated Connective Tissue Disease. That roughly translates to some-sort-of-connective-tissue-disease-but-we-don’t-know-what-or-how-to-treat-it. I was looking at 60 years of pain ahead of me and I wasn’t happy about it. No, I couldn’t pass that on to my kids.

But even as I said it, I still hoped I’d somehow have kids. I might adopt. I might marry someone with kids. Maybe I’d marry a woman who wanted to get pregnant. But it still hurt that I’d never be pregnant myself. I’d always wanted kids.

When we had room for an elective in high school, my friends took art and drama. I took a child development class. I started babysitting at 12 and continued to babysit regularly for many years. I was a camp counselor for 6 summers. I always loved kids and always assumed I’d have some of my own. And I didn’t just assume it because that’s the societal expectation (though I’m sure that was part of it,) but because I really wanted kids. The question wasn’t if. It was simply how many and with whom?

So this was a major change in thinking, and it really didn’t help to have people constantly suggesting that I should still have kids. They’d tell me that there was no guarantee my kids would have what I had (and they’d conveniently forget there was no guarantee my kids wouldn’t have it!) They’d say someone might find a cure. Right.

As I moved into my 30s, that conversation stayed about the same, it just became less frequent. My friends knew where I stood, so there was no point in talking about it. No one else brought it up.

But in the last couple of years, something shifted. It’s probably my age. Now that I’m at the do-or-die stage (so to speak) people are asking if I plan to have kids, because if I don’t have them soon, I never will. Ok, I get that. And I don’t really mind that question. What I mind is that they don’t accept my answer!

If I say no, they ask why not. I sometimes say I’m too old, because that’s a convenient answer. But it doesn’t work. I then hear about how their sister’s friend’s coworker had a baby at my age. I point out that their sister’s friend’s coworker was probably married at my age. And already trying to get pregnant. And ready to have kids. And she probably carried the baby for around 9 months before that. I see them look surprised as they do the math. Yeah.

The truth is, I’m single, and I have no intention of having kids alone. I also never wanted to be an older mom. There’s nothing wrong with it, but it’s not for me. I don’t want to be 60 when my kids go off to college. I don’t want to pass along these genes, but that doesn’t bother me as much as it used to now that I have some diagnoses and some treatments that would have worked great if they’d been used 15 years earlier. But I’m still in my late 30s and I’m single, and that’s a problem. Plus I have fertility issues that – funny thing – I don’t go around telling everyone. So even if I can get pregnant, and we don’t know if I can, there’s a good chance it would take a few years.

I think it’s time for some math. Let’s say I meet the love of my life tomorrow. Unlikely, but let’s pretend. We date for a year and then get engaged. I don’t care about a big wedding and let’s say they don’t either, so we’re married 6 months later. Then we start trying to get pregnant immediately. It takes at least 2-3 years to get pregnant. Then 9 months of carrying the baby. We we’re talking around 4.5 years from now. By then I’d be in my 40s. That’s a hard time to get pregnant even for someone who’s healthy!

And that’s if we don’t consider the other reason I can’t see having kids: my symptoms. I can barely take care of myself right now. I struggled to take care of a dog. How the fuck would I take care of a baby?!? Or a young child?!? I’m exhausted after an afternoon with my nephew. I visit my friend and her family for 3 days, she does all the cooking, I stay home half the time she takes the kids out, and it’s still more than I can handle. I couldn’t do that every day without doing real harm to my body. Other people do it. Plenty of you are parents. And I applaud you! But I don’t see myself handling that well right now. And it would break my heart to not be able to pick up my child. But that would be the reality.

And then of course there’s the pregnancy itself. My hormones, my joints…. I don’t see them faring well.

And as if that’s not enough, there’s the part where I honestly don’t know if I’ll ever find someone I want to marry, much less make that happen this year. But see the math above – this year would already be too late for me.

These are all very legitimate reasons to assume that I won’t be having kids. But why should I tell strangers and acquaintances all of this? Why isn’t it enough for me to say no, I won’t be having kids unless I marry someone who already has kids? Why can’t people just believe me and move on?

Probably for the same reason they can’t let it go when I say, “I’ll never be cured.” But that’s a subject for another day.

What about you? Do you deal with this? How do you handle it? What do you say? Please comment and let me know!


The strangeness of “I could never do that”

April 13, 2016

Me: I don’t eat gluten.
Them: I could never give up gluten.IMG_20160413_173002

Me: I can’t jog or do any exercise.
Them: I could never stop exercising.

I hear this response over and over. The “I could never….” response. And over and over I have the same response: you really don’t get it.

Let’s take gluten as an example. When I say I can’t eat gluten, even though the other person knows it’s for health reasons, they’ll say, “I could never give that up.” What do they mean? It’s not as if I gave up gluten on a whim. No one offered me a cure for Celiac and I said, “Thanks, but no thanks.” I wasn’t asked, would you like to give up gluten just for the hell of it?” No, this is necessary for me to live.

So when someone says, “I could never give them up,” what I hear is, “I would rather die.” Because that’s the other option. Give up gluten or die. No, death wouldn’t come immediately, but it would come eventually. And in the meantime there would be a lot of horrible nausea, pain, and other symptoms.

When someone says, “I could never do that” they probably mean that they’re impressed that I can do it. As if I have a choice. They probably mean it in a nice way. But it doesn’t feel that way. Because the other thing I hear is, “I love this thing so much, I can’t imagine living without it, but you can’t have it.” Again, I know they don’t mean it that way, but that’s how I hear it. They get it and I don’t.

Exercise is the same thing. When someone says, “I could never give up skiing/jogging/dancing/kickboxing/some-other-form-of-physical-exertion” what I hear is, “I would rather die” or “I love this thing so much that my life wouldn’t be complete without it, so your life must really be lacking.” I’m sure they don’t mean to convey that message, even though I do get the feeling they’re privately thinking it. Because what else could they mean? When I say, I can’t do that, and I really can’t, even though I want to, but my body won’t let me, then they know I have no choice. Responding that they could never give it up just shows me how important it is to them.

What if I was in a wheelchair? Some days I have been. More days I will be. So far, no one has said, “I can’t imagine not being able to walk.” But I’m pretty sure they will. Because to them, life can’t be complete without the ability to walk. Yet I’m also pretty sure that if I told them they had to choose between using a wheelchair and death, they’d choose the wheelchair.

I keep offering death as the alternative because as far as I can tell, there is no other. It’s not like I can find some other alternative through “trying harder” or some miracle cure that I’ve simply chosen to not take. This is my reality.

Every time we’d talk about my grandmother’s advancing age, she’d always say, “It sure beats the alternative!” Then she’d blow out the candles on her birthday cake. She said that every year until she passed away at the age of 94.

So from now on, when someone says, “I could never….” to something that I have no choice about, I’m going to say, “It sure beats the alternative!” and then give them a moment to figure out what I mean. I think that might shut them up.

Because even if they don’t mean it to, it hurts.

What has your experience been with “I could never….”? Do people say it to you? How does it make you feel? How do you respond? Please comment below.


How dare they!

March 8, 2016

Last year I got a surprising letter in the mail: I was coming up on the waiting list for Section 8! Section 8 is a housing program where the tenant pays up to 30% of their income in rent and the government pays the rest. This is huge!

Now, it’s not all great. Section 8 has strict rent limits that are very hard to meet. For example, in my town the rent would need to be no more than $1187 per month, including all utilities. I haven’t heard of a 1-bedroom apartment for so little in many years. Still, I figured it would be worth trying.

The waiting list for Section 8 can be 3-4 years. I’ve only been on the list for 2 years! Wow! So now it’s time to prepare, right? They need a lot of paperwork. Of course. I handed it all over.

Now, if you’ve ever applied for benefits in the U.S., you know how intrusive it can be. They want to know how much your income is. They want to know your spending on every little thing. They want your social security card, driver’s license, bank statements, copies of approval letters for all other benefits (because heaven forbid the agencies actually speak to each other!) and all sorts of other things. But I do it, because that’s how I’m sort of paying the bills right now.

I really hate handing over bank statements. There’s something about that which feels particularly intrusive and unnerving. But I did it. 12 months of bank statements. It took ages to print out all of the statements and white out the account numbers. Still, they showed which bank was mine, how much money I had, what I deposited, what I paid out, my name and address, etc.

And they lost them.

Yesterday I got a letter in the mail saying they needed my bank statements. I contacted the woman in charge of my case and she said she didn’t have them. I had her look again. She still didn’t have them.

What the fuck!?! They lost my bank statements for all of 2015!!

And now they want another copy. I know they want that copy before they’ll give me benefits, but is it worth it? Because honestly, I don’t know that it is. I’m not sure I’ll be able to use Section 8 anyway. And what if they lose them again? I was so unnerved that I didn’t even want to mail those statements, so I hand delivered them to the office. I really couldn’t have done more.

I’m not sure what I’ll do, but I know I’m pissed. And I’m going to let them know that. Because this is COMPLETELY UNACCEPTABLE!


%d bloggers like this: