Invisible chronic illness is one of the things made me a feminist. My whole life I have been sensitive to and advocated for parity for women in medical research and drug trials. Seeing how certain diseases are treated seriously, and others are treated as “all in women’s heads” – mostly because they are invisible, makes my blood boil.
Women are more than three times as likely to have autoimmune conditions than men, and are more likely to have chronic issues with migraines, painful reproductive problems such as endometriosis, and a multitude of other disabling, but invisible illnesses and disorders.
I have been living the health care struggle since my childhood, when my family was on one health insurance, and I was on the state plan which had to take everyone, pre-existing conditions and all. The older I got, the higher prices skyrocketed and the more difficult it became to simply write a check for services and medication.
Those of us who live with invisible illnesses live in two worlds – the one where we “pass” if we are having a good day, and the world we retreat into when our symptoms flare. We may drop out of sight for a day or two or three, but people are so busy they may not notice we’ve been gone.
We sometimes struggle when someone asks “how are you?” We are not always “fine,” even though we might look it. It’s difficult to know how to bring up our illness(es) or health challenges to new friends or coworkers, when it is time to explain why we may not be able to commit to ‘X’ activity. If we hide our illness, we exhaust ourselves. If we bring it up, we risk becoming an object of pity or neighborhood / office / school gossip.
The feminist movement is largely silent concerning women’s invisible disabilities and illnesses. That should not be the case, when just about every woman can name several friends or relatives struggling with some sort of invisible health issue? Off the top of my head, I can name friends and acquaintances with lupus, irritable bowel syndrome, cluster migraines, PCOS, rheumatoid arthritis, vulvodynia, MS, and fibromyalgia. These chronic conditions predominantly affect women.
In the early 90′s, I advocated support for health care reform, when supporting Clinton’s candidacy for president. The young healthy college students around me didn’t understand why it was such a big deal. I wonder now how my age cohort is managing, now at peak age risk for autoimmune conditions and other disabilities, with the still unchanged system in place.
It took me quite a few years to realize that the disability movement includes me, the woman who looks healthy but is not. I realized that people with disabilities are not just those who use wheelchairs and canes, but people like me. It can be a shocking realization for many women in the same situation. We may be so good at “passing” that it doesn’t occur to us that we have any right to the label, and the power that can come from being part of the disabled community.
Now I’m straddling two communities: the feminist community, and the disability community. What both communities want is equality. Hopefully as more feminists self-identify as disabled (healthy looking ladies
with hidden health issues, I’m talking to you!), the two communities can become more integrated.
Ms. M has had rheumatoid arthritis since the age of 10, and has accumulated other autoimmune diseases since. She can still “pass” as a healthy woman in her late 30′s, fortunately or unfortunately
(depending on the day).
Great post. I am lucky enough not to have a chronic illness, but I’ve long been aware of the way that many conditions disproportionately affecting women are viewed. I also cringe when healthy people, sometimes well-meaning feminists, pontificate about the “medicalization” of conditions that severely affect quality of life. It’s not the condition that’s in your head — it’s the idea that chronic pain, severe depression, fibromyalgia, etc. are problems. Just change your attitude! Uh, thanks.
Wow this really hits home. I have chronic migraines, i.e. a migraine every.single.day. I have tried every treatment – both medical and alternative and nothing helps. I have good days and bad days, but mostly bad and sometimes the pain is so bad I think suicidal thoughts – although I would NEVER act on them. I am lucky to have excellent health insurance and loving, supportive parents. But it’s so hard sometimes. And I “look” fine because the pain is invisible. Thank you for this post.
I heartily applaud this post. I have been living with two invisible disabilities since I was 13, and it was really was not until the past year that I started to see them for what they were. I went through a lot of time just thinking I was different and not putting the two together.
The past year through a great doctor and getting more into reading feminist websites, and talking to more women who identify as feminists and disabled, has been a huge eye opener. It helps to know that I am not alone and to find support. I have mentioned before I am lucky enough to not suffer the depression that tends to go hand in hand in my disorders, but I do have anxiety, again, it’s reading posts like these that helps.
So a BIG thanks
Would you (or whoever) consider depression a disability?
I started getting severe and frequent migraine a few years ago. I was lucky to have excellent health insurance, and even luckier to work at a place, for a boss, that was incredibly supportive. My boss got sporadic migraines, so all of a sudden when I started getting them every other day, she understood my pain (literally) and let me go home early, come in late, act all fuzzy and drunk at work.
I’m also clinically depressed. It used to be really, approaching suicidal bad, but since getting older it’s lessened. But since the beginning of January I’ve been in a really bad way. Staying in bed, crying for no reason, having trouble concentrating on anything except bad tv on the internet, going from not eating anything all day to eating a gigantic hot fudge sundae and half a bag of potato chips* at midnight after being dizzy all day (who needs vitamins?), and just generally being fucking miserable. I’m supposed to be writing my thesis, and I have a plan and a reading list and in my imagination, while lying in bed, I work on it, but I can’t bring myself to even open Word. It’s fucking crazy. I haven’t even spoken to my advisor yet this semester about it, and now it’s a month into the semester and I can’t bring myself to call her and talk to her about my project. I’m worried that if she hears I’m depressed, she’ll think that I’m unfit for grad school. Or something. And it just spirals into me laying in bed petting my dog all day, refusing to face my responsibilities. This has been so much worse than my migraines. Those are so intense, and lead to 24 hours of pain –> sleep –> drunken-like affects of my meds. But when I wasn’t in the cycle of pain and meds, and nowadays I only get them every other week or so, I could actually be a productive human. Now, I’m just like a blob of apathy, and for the first time since college I feel like I’m incapable, like literally unable, to get my shit together.
Sorry. Didn’t mean for this to be so whiney. I guess I just usually categorize “mental illness” as separate from “disability,” but I’ve never felt so disabled before, and this post made me consider my problems in a new way.
*Don’t even get me started on how many people have been telling me I look like I’ve lost weight and I look so healthy. Argh.
Thanks everyone for responses, I have never done a public blog posting before and was quite worried about it!
@Cim, yes depression is an invisible disability. It can be just as tough to live with as a physically manifesting illness.
Frankly, I think there are waaaay too many divisions on what is a “real” disability and what is not.
My definition is, if it affects your life in a profound way that “healthy”, “normal” people don’t deal with, that’s a disability.
I suggest reading over at FWD/Forward, it is a safe place (like Harpyness), and very inclusive.
The reality is that health is a very precarious possession. Anyone who has suffered a temporary disability will be shocked to find out just how difficult it can be to navigate the world. Even if there were no other reason to do so, being aware of the problems associated with disability is likely to be of benefit to ourselves. Working together with those who are disabled, we can make the world an easier, kinder place for all of us.
Thanks, Ms M, for sharing your story. What changes would you make in our society to improve conditions for people who are disabled?
Thank you for this post.You’re our voice in a society that that doesn’t acknowledge what they term as invisable illness.
Ms M. What struck me most about your post was your statement about living in two worlds. That really hit home for me.
My sis-in-love is out doing things and connecting face to face with people 9 out of every 10 days, and loving it.
She made a comment that I am connected in the same way through the internet. Uh. no.
Because of my disability, especially at this season, I go for weeks unable to leave the house.
Don’t get me wrong, my world would be much harder to live in without internet connections, and I greatly value them, but is is NOT the same as being able to go out, and interact with the ‘other’ world. I miss it so much some times.
She tries hard to find commonalities, and loves me and wants to understand and be supportive, but like many people, just doesn’t truly seem to get it.
Cimorene–I’m kind of shocked to be reading a variation on my own story (smacked with a nasty cycle of depression, in bed, can’t write, avoiding advisor, feeling incapable, told that badly-lost weight is a good thing). Oy. It’s really, really hard. I can’t do a whole lot, but you can PM me if you wanna talk. I have been there. Sometimes I am still there.
Ms. M–Thank you for your post, and for being part of our community. :’)
Ms M,
Thank you for this post. I have had since birth a small spine defect that is likened to a knot in the nerves in my lower spine. It doesn’t affect me everyday and I have good days and days that it’s everything I can do to keep myself sitting upright at work. I have yet to find a doctor who can figure out what it is and when I have spoken of it everyone gives me a comment around the lines, “Cant be your tits, you don’t have any!” or “You sure you didn’t sleep funny?” and they write it off as my being overly sensitive so I don’t really bring it up. Ever.
It’s hard when it’s not something obvious like your ear hanging off your head or a missing limb. Best of luck and I am so sorry to hear about your pain.
Thank you Ms. M! As you know, this issue is near and dear to me. I often wish I could put a name to my own issue because it’s not a disorder or illness and therefore I can’t get through to people with just one word or phrase. Anyway, you did a fine job!
Oh, Ocean_breeze, I can relate to that kind of back pain. Hugs if you want ‘em.
And I know it’s a no-no to advise people in pain about their pain but have you had an MRI? That’s how I finally found out what had been bothering me for over a decade.
Ms. M, thank you so much for this. It really touched a nerve, especially since, as Cimorene talked about, depression can be an extremely crippling “invisible illness.” Also, bulimia, which can also be “invisible” for so many people. There is a sense that if you’re not visibly ill/handicapped, whether that means emaciated, on crutches, or what have you, there is a “faking it” mentality, something that makes people feel even worse about their condition
I’m one of those healthy looking ladies with hidden health issues and I’m standing right beside you, straddling the feminist and disability communities.
I know that I’m echoing everyone else here, but I also have to thank you for this post. I struggle with a learning disability that affects so many different aspects of my life. On top of that, in recent years, I started suffering from two different autoimmune issues. These autoimmune issues also have a directly affected how my brain works. Adding those to the challenges of my learning disability, let alone the physical issues, it sometimes becomes difficult to navigate my way.
Thank you, Ms. M!
I’m yet another one of those ladies with a collection of “invisible” illnesses – mostly autoimmune related – that have accumulated since around the time I hit puberty. I spent a lot of times with doctors diagnosing my symptoms as mental rather than physical, telling my mom I needed some “stress management” advice to make it all happy and better.
I’m in my late 20′s, and I often have trouble identifying these conditions as a disability. I therefore am often very hard on myself when I miss days of work or just can’t function in a “normal” or “healthy” way. Having someone else acknowledge that these conditions are, in fact, disabling is very empowering for me.
Also, thanks for the rec of FWD. I’ve added it to my blogroll!
Even now, I’m slapping my hand for writing the previous comment. Somehow, admission of my illness still feels like whining to me – “no one wants to hear that, Georgie! So you have some pain. Just grow up and get over it.”
So again, thanks for the safe space, and thanks to all the other ladies who disclosed their disabilities with clarity and without self-shame.
Thank you for writing this!
I am lucky to have a job and boss who aren’t punitive about sick leave, even though I completely have a “pattern” of use and am always nearly out of accumulated time. But in the past I have been let go from jobs, have had to leave jobs in anticipation of being fired, and had out and out arguments with bosses which come down to: Come to work, or don’t bother coming back.
I’m not sure what my point is exactly, other than who the fuck thinks this is an okay way to treat human beings?
@bellacoker: I know what you mean. I’ve had the fight with bosses, but I’ve also had it with school administrators. When I was in high school I tended to miss near the maximum number of days allotted to kids in our district (around 20, I think) every year. One year the principal actually called my mom and threatened to hold me back, despite the fact that the absences hadn’t affected my grades or my work. And even if they had, I was still TECHNICALLY UNDER the allotted number. Still, he insisted that I had missed “too much” based on an arbitrary number. My mom fought him and I didn’t have to be held back, but we got the same gripes from him every year after that.
Another awesome Harpy post. Thanks Ms. M. :O)
Had some sort of (unofficially diagnosed) autoimmune flare up this past year that made 2009 misery for me. In short, may have been precipitated by a bad cold virus + severe vitamin D deficiency. Left me constantly sick and tired, covered in hives and eczema, and at one point, with feet swollen so badly, the seams of some very sturdy cowboy boots busted open. Not fun.
Anyhow, this experience, and the experiences of a relative with Lupus, have made me wonder, “What can be done to make things better for people with these issues?” Raising awareness is a biggie. It seems like we (meaning the general public) are not even really aware of these issues – and how widespread they truly are. How do these issues make it into the mainstream press? I really have no idea… I know that the breast cancer awareness movement was really a movement started by the people affected by it and not by the medical establishment. Maybe we can take a page from that playbook.
But even with greater awareness, I think there’s something else that needs to happen within our culture as a whole. It seems that good health = morally correct, psychologically strong, good choices. Poor health = immoral, psychologically weak, poor choices. Maybe it’s kind of like “blame the victim?” It’s so hard for people to get their minds around the idea that you really can “do everything right” and still get sick. It seems like the world tells you, “You must be doing something wrong. And you can fix it, if only you work hard enough/are good enough/really want it.” What IS this thought process and how can it be changed? I don’t think I’ve defined it super well, but I think you may see what I’m trying to get at.
So frustrating! Anyhow, thanks, Ms. M. and the others, for sharing. :O)
@PetiteXL YES! I constantly hear “you must be doing X wrong” – whether it be something I’m eating, drinking, breathing (ie mold, allergens, etc.) to cause my migraines. Believe me, I’ve tried eliminating every single kind of trigger and nothing has helped. But all the people around me insist it’s something I’ve caused myself. Very victim-blaming. It’s very frustrating.
Ms. M,
Thank you for sharing your story. Invisible disabilities are very hard to live with. And they can be very hard to diagnose correctly!
@PetiteXL: Exactly. We have a primitive streak in our thought processes that leads us to attribute illness to something someone did, because the idea that random bad things happen to innocent people is too scary to live with.
FYI, giving credit where it’s due, the breast cancer awareness movement was inspired by the HIV advocacy movement, which was the first health care issue movement to take its demands to the streets and to the public directly.
And finally, some good news on this issue:
http://www.post-gazette.com/pg/10044/1035678-455.stm
@mischiefmanager: Didn’t know that breast cancer movement was inspired by AIDS movement. Thanks for the clarify… :O)
And yes @mm and @theorchidthief I guess somewhere in the primitive part of our brain the “you must be doing something wrong” charge must feel like some sort of talisman against bad things happening to you… Also has the bonus effect of getting you to shut up about your problems. :O) Well, now I’m just being morbid, but… strikes me as a little true!
Gosh, I had no idea so many us struggle with “invisible” illnesses. Thank you Ms. M for sharing your story and everyone else for sharing theirs.
I have a manageable case of epilepsy mostly controlled with medication, but it has always been a struggle to explain to friends/professors/co-workers about the side effects of my medication.
I wish our society didn’t have that stigma that being sick is somehow our fault and not worthy of compassion. I am grateful for this safe space where we all feel open.
[...] Advocacy and the Media. There’s more health-related blog posts this week, including Ms. M on Living With Chronic Illness, a Guest Post – about living with chronic conditions while feminist. And also, Voices of the Uninsured [...]
Like many others this post struck a familiar chord.
I suffer from (relatively mild) depression, which affects my immune system (ie. I’m out sick A LOT). I’ve been working in my first full-time permanent job this past year and it has become apparent that I can’t go on like this.
Luckily it seems that my employer might be willing to let me reduce my hours (I put it to them as “you’re paying me for time I can’t deliver”) – but it still feels as if I’m “failing” at grown-up life. Even years after my diagnosis there’s still that voice inside me that insists I’m “faking”, “taking the easy way out”. :/
ETA: And what I mean with “relatively mild depression” is that I’m currently on the highest dosis of meds I’ve ever been on and thankfully not experiencing the emotional numbness/real darkness of earlier years.
I have several chronic conditions that I’m managing pretty well right now – migraines, endometriosis and adenomyosis.
I’m lucky enough to have found pill combinations that work for me, with little trial and error. One thing that grates on me is the constant suggestions on what will make me “better”.
My pills give me a normal, relatively low-pain life. I’m not going to quit them just because you’re a stupid asshole who thinks that gluten is the cause of all health problems ever. Please stop telling me what causes migraines, because I guarantee that I KNOW DAMN WELL BETTER THAN YOU DO.
Also, I could rant for ages about having a female-reproductive system related illness. I don’t know what is worse, being forbidden from seeing a doctor about it as a teen because my mother’s church forbade birth control use and she thought that the doctors would put me on it, or being constantly told that “everyone gets cramps”. Yes, most women do get cramps, but I can guarantee that most women don’t feel like something inside them is exploding whenever their period happens, or pass out from the pain. UGH.
This is interesting to me, because I suffer from a couple of the conditions mentioned (migraines and what is probably early-state fibromyalgia), yet I’ve never thought of myself as a person with a disability or chronic condition. However, that’s exactly what I am – I am sometimes felled by pain and fatigue that I can’t control, and that stops me from working, socializing and living my life (add in chronic depression and anxiety, and I’m just a ball of fun some days). I have friends my age who have irritable bowel and other digestive issues, who frequently have to excuse themselves from social outings if their digestive system is not up to it (and according to one friend, it gets very awkward trying to tell people you don’t know well that you can’t meet up with them because you have torrential diarrhea).
On the victim-blaming…people have only begun to recognize fibromyalgia as a “real” illness in the past few years. Previously, it was thought to be “nerves” or “all in your head” (as are most ailments that affect women).
And with my headaches – I’m 30. I have suffered from them since I was 21. My mom and grandmother have the same type of headache. I have seen GPs, internists, a neurologist, professional massage therapists – pretty much everyone I can think of. Yet the pain persists. It’s unpredictable, can strike like lightning, and render me nauseous and dizzy in minutes. Every time I have one of these headaches, my boyfriend will say “Why don’t you see a doctor about that?”. And every time I explain that I have seen doctors – multiple doctors – and tried many medications, and Nothing Works. He says “well then try another one – you can’t live like this.” It makes me feel bad, like it’s somehow my fault for not pursuing treatment aggressively enough – even though over the course of years I have tried almost every therapy I’ve heard of, and seen multiple professionals who all shrug their shoulders and say they don’t know. The only thing that has ever really worked is a very strong painkiller + muscle relaxer combo – which I can’t take if I need to drive a car or focus on something.
So, yeah. I guess I do have disabilities. And they suck.
I’m coming very late to this, but thanks for sharing. It’s really made me think, as have the comments (particularly Cimorene’s comparing depression to other disabilities – I hadn’t thought of it that way before, but it’s really a very enlightening way of putting it).
I’ve dealt with invisible problems (an auto-immune problem that would flare up once every few months for a few years, but which seems to have finally resolved itself *knocksonwood*, an eating disorder waybackwhen, occasional mild depression). Nothing on the magnitude of some of the comments here, but enough to make me understand what it can be like. I just sort of want to hug you all now after reading these stories!
As a woman of 28 living with lupus and fibromyalgia – the wonderful “its all in your head” illnesses, i have recently considered applying to my local council for a disabled parking spot/sticker. i can imagine the derision that would accompany the application especially since am very healthy looking..
My city, Nairobi, is very crowded and has FEW parking spaces…hence getting a parking spot is quite a nightmare. The other day, i had to walk 7 blocks to my meeting and ofcourse with the sun, i had a serious flare afterwards…
Invisible illness takes quite a toll, and yes, its a disability…