I have been managing my chronic pain and taking care of myself for years. But taking care of myself requires the cooperation of other people, and that can be the most difficult challenge to overcome. I cannot take care of myself or be well if others do not take my pain seriously. Just because I was able to do X yesterday does not mean I can do it today. The pain comes and goes. Once it starts I have to let it take its course. But society caters to people who are able-bodied and physically strong. Illness and pain are not compatible with the typical pace of life, and I admit I have anxiety about falling behind.
Living with an invisible disability can be exhausting – not only because chronic, searing pain is energy-draining (in my case), but because it leaves behind no evidence. Communicating with others about my pain often leaves me feeling misunderstood and isolated. Sometimes I want to wear tops that reveal my scar all the time, in order to silently “prove” there’s a *real* reason I just want to lie down, can’t carry that ten pound box, or don’t want to stay out all night partying. I cannot shake the feeling that other people doubt me or believe I use chronic pain as an excuse to get out of doing certain things.
Without revealing too much, I do a fair amount of traveling for my job. It’s not something I enjoy. Air travel is physically distressing; the long hours spent sitting in uncomfortable chairs are agonizing. Last week I jerked and squirmed in pain during lunch with co-workers and business associates. After the dessert course I turned to my co-worker, S – who knows about my affliction and is extremely understanding – and told her I was about to break down and I’d be back in a few hours.
I made it upstairs to my hotel room before I burst into tears. S knocked on my door a few minutes later and I explained that I could not be there for any afternoon sessions. She promised to take care of it and said she’d tell [one of our bosses] what was up. I took a nap after struggling through the pain to fall asleep. Sometimes my body will restore itself after an extended period of rest. When I woke up I did feel better, though my body was worn out after it’s assault on itself. I managed to make it to the banquet that night, and had a good time. Still, I was nervous that my cross-country flight the next day would send my body into a tailspin once again.
And so it goes. I wish I did not have to travel at all, but I don’t want to lose my job entirely. Although she technically knows about my chronic pain, my boss acts oblivious. I would love to say to her, “I will not be flying coach anymore,” but I am not confident enough. I would love to demand an Aeron chair for my office. When I take a sick day due to pain I wonder whether my colleagues think I’m a poor worker. Do people think I am a slacker for not going to business dinners after eight hour workdays? Even though I have been advocating for myself with medical professionals for years, I struggle to make sure my needs are met in other aspect of my life.
So, I guess I want this to be a reminder that just because a person does not “look sick” does not mean they are healthy or physically robust. If anyone reading has dealt with this sort of thing and had success advocating for themselves in the public world, I’d love to hear from you in comments.
It’s funny, Sarah, that, at least in my experience, there seems to be a lot more acceptance of emotional illnesses than invisible physical ones. If someone says they’re depressed/phobic/bipolar/ADHD (not an emotional illness, but you get the point), they tend to get taken at their word. But it’s a lot harder for someone like you to get the same treatment. Maybe it’s because so many of us have been diagnosed with an emotional illness, or if we haven’t we know someone who has. But especially for you kids
, invisible physical illness is “something we don’t talk about”, like it’s bad luck or faintly rude.
I told Sarah recently that I have a male relative who has a similar “invisible disability” that causes him a lot of pain and sometimes mobility problems. He works as an inventory stocker at Loews and because it’s a very masculine, blue-collar environment, there’s even less willingness to accomodate his problems than there is for my sister, who has the same condition. I think because my sister’s surrounded by women in her field and he’s surrounded by men, she finds more support/sympathy than he does.
Which isn’t to be all “what about the menz?”, I just offer it up as an example of how this issue sucks for EVERYONE.
I’m fortunate to work in academe, and at a public university, where scheduling is relatively flexible and I have a lot of control over when I do which tasks. I haven’t (yet) had to invoke ADA accommodations, and was even able to get a fancy office chair that can be adjusted to be comfortable on my irregular spine more easily than standard office chairs, but I’m wondering if your HR department could help you with some of these issues. I think an Aeron chair and non-coach flights could be disability accommodations.
Wait, do you have an HR person? You absolutely deserve accomodations (I don’t know that you will get first class every time you fly, but I feel like a special chair might be possible) in the workplace and you should not have to negotiate with your direct superior to get them. Not to be too “fix the problem” about it because I know you didn’t write this looking for advice.
oooor I could just read other people’s comments.
I have terrible back pain, and also stomach ulcers. ALSO, diabetes. SO, most pain management medication (you know the stuff that actually works, or the stuff that is legal) is off limits to me. It just exacerbates the ulcers and makes me nauseous to the point of uncontrollable vomiting. The back pain, when it flares up, prevents me from doing MOST ACTIVITIES, including my job. My entire core is useless, and simple tasks are agonizing. When the ulcers are bothering me, it’s not just nauseating, but it is also excruciatingly painful. I don’t want to eat anything. So then my blood sugar, from the DIABETES (which I control with my DIET because I do not want to be insulin dependent), gets into some dangerous levels and it all goes to hell. Needless to say, my boss and co-workers are sick and tired of my “behavior”. I’m pretty sure my boss has been looking for reasons to fire me. We don’t get sick days, though. Nor vacation. I also do not have health insurance, so I’m in a lot of debt. I wonder if there is a place for people like us anywhere in the world.
I know what you mean. I suffer from fairly frequent migraines, and it appears that I have inherited a tendency toward arthritis and fibromyalgia from my grandmother. To top it off, I struggle periodically with anxiety and depression. These are all fairly invisible ailments, but on really bad days they can be downright debilitating (particularly the migraines). It’s hard to explain to people sometimes why I suddenly don’t feel like going out, or why I can’t get anything done at work while my body is screaming in pain. And I always feel like a ninny taking a sick day for a “headache” even though a true migraine is a thousand times worse than just a simple headache.
I work at a university, and we actually have a consultant we can call in to do a free evaluation of our workspace and determine if we have the correct chair, keyboard height, etc. I haven’t had to invoke that yet, but I’ve been tempted. However, I have no idea if my office would actually have to follow through on any recommendations that would require purchase of new equipment. My guess is No.
I agree with the other commenters who say talk to a HR person. I know the temptation is to keep your head down (particularly in these bad economic times) but honestly the law is on your side here.
I’m sorry to hear about your pain during traveling that must be miserable. Whenever I’m not feeling my best, it just makes it 10 times worse to be away from my house/bed etc…I also understand about being exhausted from the pain. I get migraines occasionally and the day (or 2 whatever) after the pain subsides my body just literally feels drained of all energy. Pain is really really physically taxing, which is something I think people don’t get.
Danielle, I really feel for you. I don’t know what I would do if I did not have insurance.
Flackette, I wish I had a word like “migraine” I could use to describe my situation. I doubt most people know exactly what a migraine is, but it’s a recognizable word that most people associate with horrible pain. It seems like they are sort of similar – as far as how debilitating they are. Best of luck in handling all that. It sucks.
There is not an official HR department at work but I will probably bring a few things up with my boss when she conducts my annual review (should be in the next couple months).
@Flackette: I get debilitating migraines as well and work at a univ. My dr. wrote me a letter saying that I need an ergonomic workspace and they gave me that.
@Sarah: Could you get a letter like that and get your chair?
I live in pain always with severe fatigue added in frequently. I can’t even get doctors to recognize the problem or get a diagnosis and treatment. It seems impossible to get anyone to understand that sometimes I just “can’t move”! But I have been reminding myself to care more about taking care of me and less about what others think about it.
I feel your pain, literally and figuratively. I’m a healthy-looking, relatively young chronic pain sufferer. So much of what you wrote reflects my experience.
I know, but can’t prove, that I’ve been passed over for jobs because of this. And I have family members that still suspect (at best) that I’m exaggerating my condition.
The biggest misunderstanding I run into with family has to do with my medications. I do have to take opiates. I take them under strict doctor’s supervision. I take only what I am prescribed in the amount it is prescribed. My access to the meds is ridiculously well-controlled, and I’ve never tried to obtain medications through any illegal or unethical means.
(The only pain doctor in the area is an hour-and-a-half away by car. Because my medication is a controlled substance, my doctor cannot give me a scrip with refills on it, nor can he call refills into the pharmacy. So every 30 days I have to make the hour-and-a-half drive to physically pick up the paper scrip. This is inconvenient because it is out of my way and because the extra driving tears me up something awful. But I do it because a) I have no choice, and b) because I understand that the pills I take are no joke and I take my treatment very seriously.)
So while I have a physical dependence to the meds (if I stop taking them suddenly I will have withdrawal symptoms) I AM NOT JUNKIE. It’s a distinction that few in my family understand or show any desire to understand.
I’m really glad you posted this, Sarah. The responses are helpful and comforting. I hope things get better for you.
Oh drinkyrose. I don’t know what to say, besides I know what you’re going through. I’m on opiates too and I know exactly what you’re talking about (re: obtaining them). Luckily my family is very supportive, although my mom – who works at a drug & alcohol rehab center – gets antsy about me taking the opiates sometimes. I think it just makes her sad that it’s necessary.
One thing these threads always teach me is that I am not alone and I have a lot to be thankful for. I hope things get better for you, as well.
As far as words are concerned, I think it is far more important to give precise relevant information than it is to explain everything. In this culture, there is this idea that disabled people are public property and we are obliged to disclose our medical histories if we want people to “understand”. When of course, understanding is by no means necessary (or sufficient) for respect and respect is what we need to get on.
So I very rarely mention my diagnosis, but state whatever fact is relevant to the situation. And the less emotional it sounds, the better. There’s a temptation to emphasise how much things hurt or how exhausted we are, but I think people are distracted by emotional information – if you say “My legs hurt so I need to sit down” people tend to get hung up on the legs hurting and take longer than if you simply asked for a chair.
And it’s fine to simplify your condition and your needs. I often talk about sleeping when I mean resting totally without necessarily nodding off. Most people never lie down for hours without going to sleep, so my “rest” is an alien concept. If I say, “I need to go sleep now.” or “I’ll need a sleep a sleep in an hour.” it just seems to press the right buttons.
Best of luck! I hope you are able to sort out better working conditions and feel a bit more comfortable about both looking after yourself and managing your work.
OMG! I’m going through this exact same thing today. I have migraines which are triggered by estrogen, so almost every month I have one. If it falls on a workday, I usually miss work, which means I take a day off about five out of every seven months.
My boss is understanding and I have good benefits, but I am constantly scared about what would happen if I “really” got sick. The sick leave system is set up to reward people who never use their leave and punish people who let their “balance” get low, as if this were a checking account and the spending is something which can be planned.
On top of that, my migraines are controlled. They aren’t as bad as they have been in the past and they are a fucking cake walk compared to a lot of people I know who suffer from the same thing, so I feel guilty for being sick and, at the same time, guilty for not being sick enough.
I have rheumatoid arthritis (RA). I have had sports injuries when I was younger and generally tore the crap out of my body being a tomboy, so when I started having severe joint pain in my wrists and shoulders in college, I blew it off until I started working at a large animal hospital, which required 10x the physical activity that I had been doing in college.
My first experience with the referred rheumatologist was pretty terrible; without examination, he told me that I had fibromyalgia and was clinically depressed, without explaining any of this to me. I was scared and stressed, and it wasn’t until my rheumatoid factor came back extremely elevated that suggested otherwise.
I found a new doctor, straightaway. At 22, I felt very defensive and frustrated that I could not abduct my shoulder farther than an inch or so away from my torso without being in excruciating pain. Imagine my surprise when I was told that it was a young person’s disease. I’ve been on meds to aggressively treat RA for a year now, and it’s worked off an on. My job is a huge thing for me – if I weren’t active, I’d be really depressed. But it’s hard to explain to everyone else who is working just as hard that I can’t X, Y, Z because I have RA. I feel like they might not believe it, and so I push myself. It’s annoying, the more I think about it.
I’m glad you posted this. It’s been something I’ve been thinking about for a while.
Hi there,
I’ve been reading the FWD/Forward blog which is about feminist issues intersecting with disabilities. I don’t know if you’ve read it, but i highly recommend it.
http://disabledfeminists.com/
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Co-sign on everything. I turn 40 this year, I’ve had chronic pain since my early 30s. I’ve got a very supportive husband, a good doctor (now – the hoops they make you go through!), but there are always doubters, because I’m basically a very upbeat and happy person, and also very private, so I won’t show my pain, just a blank face.
(Standard not a lawyer disclaimer) If you’re in the US, look into the Family Medical Leave Act (FMLA) – it’s designed to help people in your condition. It allows for time off (unpaid) without jeopardizing your job. It takes a good doctor who will verify that you qualify, but it’s worth it if you’re afraid that your work is looking for reasons to fire you. FMLA is there to protect people with long-term illness (or caretaking family members with the same) who need time off throughout the year. There’s a limit – I think it’s 12 weeks total – but if used judiciously, it will protect you for quite a while.
As several posters have mentioned, I get migraines. I’m very fortunate that my (crap) job is pretty good about giving me the time off I need, or allowing me to leave when I get struck with a migraine. Occasionally, the medication I have just do not work, and I cannot imagine how it would be if I had to stay at work with my migraine. My boss’ mother had debilitating ones, so he (thankfully) knows it’s no joke. My vegetarianism–well, that’s a joke to him.
In the past, when people would dismiss my migraines as a ‘headache’ and wonder why I needed to stay in, or go home, or take that pill from the triple sealed pill packet(or oh, god, ASK for one themselves to get stoned) , I’d have to go into details of exactly how excruciating it is to have one, and find descriptors to allow them the ability to imagine one. Sometimes it would connect, sometimes it wouldn’t.
I cannot imagine how strong emotionally you must be to get through your pain. To stand up for yourself when others’ dismiss your pain is a very hard thing. I have no new suggestions to makes, since the posts before pretty much covered it, but I wish you luck in your situation.
I would recommend having a “2010 plan” that you discuss with your boss either before the annual review or at the very beginning before she can say anything. The plan could include the chair and some modification of travel arrangements. If you bring it up as something you’ve created to address efficiency or confirmation with current laws and regulations, I think it might be received better than if she starts out with some kind of evaluation of your work and then you talk about accommodations. This is especially true if you think she may have anything to say that’s negative. You probably know this better than me, but it concerned me when you said you’d be talking during your annual review.
For 4 or 5 years, I experienced heart palpitations, which is pretty much invisible unless you walked in while i was having one and physically felt my heart beat. My job was… less than caring about the situation. I dealt with any umber of people, co-workers, superiors, hr, not taking it seriously. I brought in notes from my doctor to give to hr… I had trips to the hospital… Every time something would happen, I would have to go through the same explanations of the problem, what tests were run etc. to just about everyone I can in contact with. This was one of the big reasons I left that company. People don’t think there is a problem unless they can physically SEE it all the time. I had several superiors tell me it was anxiety, at which point I would have to bite my tongue and tell them I would look into it. It’s a sad state of affairs when people can’t empathize. Hope things get better for you!!
Following Attack-Laurel’s link to you.
Thanks for posting this. You are not alone, and it is very frustrating. Others have made great suggestions that I hope will help.
Thanks to everyone who is still commenting and lending support (and telling your own tales).
I just want to thank Sarah and everyone who chooses to speak out about invisible disabilities. I began reading people’s stories about this phenomenon a couple of years ago, and it has helped me identify and change some of my more judgmental attitudes. As an example, my old reaction to someone who takes the elevator one floor at my office was to be annoyed, but now I remind myself that the person could have any number of invisible disabilities that makes walking stairs difficult for them. I appreciate people speaking out and hope you know that you really are helping to change attitudes.
I have gastro intestinal disorders, which are pretty invisible…unless I am having what I call an “attack”. Then it pretty much scares people and causes them to say things like “wow if I were I would kill myself”. This is really not as comforting as I think they think it is. I am lucky enough to work at a university and have utilized accommodations. If I hadn’t done that, I would be in jeopardy with my job. I wasn’t aware of those things when I first graduated, and as a result, lost my first job out of college.
But to second and third and fourth, there are things employers are REQUIRED to provide and it could really help you. Good job continuing to hang in there, stating it’s hard is a no brainer.
I’ve had days where I’ve turned to Hubby and told him that I’m close to the edge of my ability to deal with the amount of pain I’m in. Being the prince he is, he’ll nod, turn on the heated mattress pad and get me painkillers. I am, in fact, skirting that edge right now – this has been a truly shitty day.
SarahMC and all, I hate to know that others share what I’m going through, but it’s always good to know you’re not alone. I’ve suffered for several years with symptoms that affected both my body and my mind. After many doctors and lots of research, I found the root of the problem and have been able to manage it with some success ever since. Sadly, I find that most of my friends and family don’t understand, or even care all that much. It’s the ole, well you don’t look sick” bit. I sometimes feel that I have to have literally be in a wheelchair for them to notice. If you’ve ever ready The Spoon Theory, that’s how I often feel.
These days, mostly, I’m dealing with the physical issues pretty well, but the emotional scars that it’s brought me are a long ways away from healing. I truly hope everyone going through something similar finds the support they deserve to not only help them through bad times, but also share the good times.
Flackette – you’re symptoms are classic under diagnosed hypo-thyroid issues. Even if your thyroid numbers are in range of “normal”, they may not be normal for you personally. I know several resources that may be able to help you that can be fairly inexpensive, if you’re interested.
I don’t have anything very deep to say, just thanks for posting this. I also have an invisible disability and sometimes would rather have a giant sign on my head declaring it to one and all. And thanks for not using that inane “spoons” metaphor–I hate the way it whitewashes the issue. Pretty soon every sports guy in the country is going to be saying of tired players that they “lost their spoons.”
K , I used the spoons metaphor ;(
If anybody thinks they may need an accomodation at work or is curious whether accomodations exist that could help them, I recommend checking out this website: http://www.jan.wvu.edu/indiv/index.htm. They have fact sheets on various disabilities, which could be useful when trying to explain your condition to an employer. For example, here is their page on chronic pain: http://www.jan.wvu.edu/media/ChronicPain.html. JAN is affiliated with the Department of Labor, and I have heard their presentations at a couple of work-related events. One thing they always emphasize is that most accomodations are low-cost or no-cost. If you think an accomodation could help you, I really encourage you to do some research and present your findings to your employer.
SarahMC, I can’t say anything useful about your situation since I’m in the UK, but thank you for posting this. You’ve made me feel much better about my invisible illnesses. I’ve always felt ashamed of not being fit and healthy while in my teens and 20s.
I haven’t workd for almost 6 years due to these problems. Thank God for the NHS and the welfare state in the UK, but sometimes I doubt I’ll ever have a job and financial freedom again because of the gaps on my CV and the added difficulties of hiring me.
Plus drinkyrose (and SarahMC) do the opiates just make you want to sleep all the time? How does you manage to wrok around that alone?
Hi gherkinfiend. I’m glad you liked the post.
To answer your question, my opiates don’t make me sleepy. I take a fairly low dose of morphine twice a day, along with a very high dose of an anti-spasmodic (which does make me kind of sleepy but not enough to keep me from working or whatever).