The Bipolar Burble blog is pleased to welcome guest author Jessica Gimeno from Flipswitch. Jessica is an online communications associate for The Balanced Mind Foundation and at only 28 is an amazing advocate for people with mental and physical illnesses.
Stigma and Compassion for Both Mental and Physical Illness
In our struggle to obtain mental health parity, I sometimes hear advocates claim or insinuate, “Everyone knows that emotional pain is worse than physical pain.” Really? Believe it or not, this comparison does not help us win society’s empathy and compassion. Have you ever sat at the bedside of a relative who was dying of cancer? It sucks. And if you’ve lived through physical pain but have no experience with mental illness, you’re less likely to have compassion for people with bipolar disorder, schizophrenia, or other stigmatized illnesses after hearing this claim.
Mental Pain is Worse Than Physical Pain?
I also know the claim is false. How? Well, I have many physical illnesses: myasthenia gravis (a neuromuscular autoimmune disease similar to multiple sclerosis), polycystic ovarian syndrome, asthma, and another respiratory illness. I also have bipolar II. (You might be thinking, how did she get so lucky?) The truth is: All illnesses—mental and physical—are hard. I know what it’s like to feel so depressed that you can’t get out of bed. That used to be my life. I also know what it’s like to endure many surgeries, not be able to feel your legs, and spend over a year lying in bed.
This article is not about bashing the mental health industry (an industry I work in, by the way)—it’s about expanding our worldview and helping others see our physical and mental pain more clearly.
Myths the Mental Health Community Has about Physically Ill People
Myth: Only mentally ill people face stigma.
Truth: People with physical illnesses face stigma too. When I was diagnosed with Myasthenia Gravis (a 1 in 100,000 disease whose causes are unknown), some people said, “If I had more faith in God, I wouldn’t be sick.” As if my disease were some kind of cosmic punishment. Sound familiar? People with mental illnesses are often told the same thing. Furthermore, just as society thinks “mental illness = incompetent,” sometimes it thinks “physical illness = incompetent!” That’s why FDR hid his wheelchair and JFK hid his autoimmune disease. Both men faced painful challenges and both were great presidents.
Myth: Society is so much nicer to physically ill people.
Truth: The world is not always disability friendly. Do you know how hard it is to find a seat on my daily train ride to work? The disability section is always full. While I carry a cane that I call Erica Kane, there are many physically ill people who look fine on the outside—they are called “spoonies.” They often hear, “But you don’t look sick.” Sound familiar? It’s like when mentally ill people are denied insurance or school and workplace accommodations because we don’t have “real” illnesses.
What Mentally and Physically Ill People Have in Common
- We are resilient. We are the sum of our challenges and accomplishments. It is true that I have been in physical pain 24/7 for the past four years. It is also true that ratings for my depression/bipolar podcast and blog, Flipswitch, have increased by over 400% in one year. In fact, the National Council of Community Behavioral Healthcare recently awarded me second prize in their Reintegration and Awards of Excellence. Someone I’m interviewing for Flipswitch asked if we should focus on symptoms of her borderline personality disorder or “resume stuff” like graduating from college. I told her we should do both. Her life is more than illness—it’s about her resilience.
- We are “über-empathetic” (yeah, I just made that word up). Because of our trials, we are better at sensing another person’s pain. When I’m crying in bed because my antibodies are attacking me, I think of others: a relative going through a divorce, a friend with bipolar, a friend with lupus, etc. I pray for them, call them up, or send cards. Pain comes in different packages but empathy is universal.
When we communicate that we understand physical illness is also hard and want mental illnesses to be treated with the same respect, we make it easier for society to show us compassion and decrease stigma for both.
About the Author
Jessica Lynn Gimeno works for The Balanced Mind Foundation. She is the author and host of Flipswitch, the award-winning weekly podcast & blog that helps teens and 20-somethings understand depression and bipolar disorder (find her on Twitter). In her free time, Jessica also runs a blog called Fashionably ill: The Cancer & Autoimmune Girl’s Stylist. Jessica graduated cum laude from Northwestern University with two majors.
I would just like to add sometimes mental illness causes physical pain or the ability to perceive it more. Then it truly is worse than just physical or mental pain because it can get caught in a closed loop with one feeding the other. The reality is sometimes physical pain is worse and sometimes emotional pain is worse. I have both and know that to be a fact. To suggest otherwise is irresponsible in my opinion…
Hello, i appreciate the angle of this post, but I guess i question whether some of these are myths? I wasn’t sure there was a strong opinion one way or the other about physical versus mental pain. I suppose I did assume that people with mental illness face more stigma than those with physical issues, but I guess I never thought that this was something that might be considered a myth. Still, it is good to raise awareness about these things, so keep up the good work!
I think that SAHMSA is stigmatizing people with serious mental illness by using the term “Behavioral Health”. My brother’s schizophrenia may have been induced by his behavior…taking PCP and LSD at the same time…and taking lots of drugs before that particular event that created his first major psychotic episode…but his behaviors after that were caused by his hallucinations and delusions and his cognitive disability that came with 32 years of endless psychosis. Yet we were told that Paul had to learn to live like an adult…yeah, and he thought he was James Bond or a Kung Fu movie star, or had 200 children that were born from his teeth….and he was expected to change his clothes and bathe everyday, which he didn’t… We would find that he had been sleeping on a bare mattress and had ben wearing the same clothes all week when we saw him on weekends…while he lived in a transitional group home…the next step…complete independence…a death sentence!
The mental health “system” caused him to wind up re-institutionalized because he was treated as a fully recovered adult with a behavioral issue, instead of a seriously cognitively disabled man with schizophrenia. SAMHSA makes no mention that some people have such serious cases that they need very intense supports…and are not capable of independent living…it is unfortunate, but pretending otherwise does no one any good…rather, much harm.
I feel that using the term Behavioral Health for serious mental illness gives the impression that a person’s behavior is the problem…not the symptom…and that is stigmatizing.
I’ve been asthmatic since age six and have heard “But you don’t look sick!” many times.
I attended graduate school at the Rochester Institute of Technology. Rochester, NY, is cold and the frigid winters exacerbated my asthma. I got a temporary disabled parking tag once when I had bronchitis and was too sick to walk through RIT’s ginormous parking lots.
A guy saw me park in a disabled spot with a legitimate tag and started yelling at me. “You’re not sick!” Well, RIT also houses the National Technical Institute for the Deaf, so people on campus are reminded on a daily basis that disabilities (or differentabilities?) can be invisible to the naked eye.
I was puzzled by this guy’s indignation. Who would say “you don’t look deaf” or “you don’t look like you have cancer”?
hi back again Ian savage here i’m feeling much more stable now, i’d just like to thank you for putting up with my rants gets a bit much sometimes.Anyway i would like to say to any one thinking of taking their own life,Dont this life is a gift your problems will still be there or worse, its the nature of things, you need a strategy for coping, dont be afraid to ask for help i say and do wrong things all the time, people will see you as you see yourself, have faith easyer said than done, but worry is nothin but a sin, a demon that will try and take you, dont give in. Ian
help me please i wascycleing along coming back, from a stress forum, which i hate; i know all the causalitys and effects, side effects, and mental repositioning, which i can do at the snap of the, whatever anyway i was looking at amy lets say, and hit the back of a car smashed the tail light , i wrote some burble the other day. any way swaped details ,got back on our bikes the next set of lights i came to ,i blurted for a better word that i used to have a crush on her, this was the? couple of days ago met her yesterday i’d been up all night ‘ any way cut a long story short i heard viagra was, good for jetlag. I was tyred. so i had just a tiny nibble.bin on subutex was on methadone 2 half years of shared houses, any way at the other meeting i erm was very tense if you know what i mean giving of feremones ,i swear this is not a wind up i started cuttingself myself cause of stress at home, sorry i cant get timline straight in my mind. i’m really worried that im gonna be made homeless cause i’m starting to feel self destructive like jumping in the river ((((((((((EDIT i’m with st martins but i dont want to get my key worker in trouble that would kill me)))))) i just dont know what to do i’ve looked all over the internet for an answer it doesn’t understand the sntence i’m typing in please if you could help please.yours faithfully(ps all feelings are coming back i did not realise the gravity what i said….she is a really good freind…THANKS
What it all comes down to is i never recived the help i needed i know what its like in the earlyer article about fingers crossed i dont want to be homeless again, what am i going to do about, my key worker i just think its all coming down on my head i’ll go jump in the river later cool me off a bit
i was thrown out of my house/flat 12 years ago, i was suffering a manic depression at the time. i could not seem to comunicate with people. felt that oblivion sinking feeling, the doctor said the nurse would be round in the next six weeks , i missed the nurse, ended up on the street, i always was the odd one out as a child, went from domestic abuse, being beaten god rest my fathers soul, he died five years ago, and i fell out with him, not him so much, but, thats another story , i made the mistake of not talking to him for years, then saw him on his death bed, so much diamorph, that he wasn’t lucid, 6 stone and that . i was working for an agency, at the time, they sacked me for the time off for the funeral. couldnt explain to any one as usuall, got into fights with er freinds, same old mis communication, i resighned myself at a young age that this was the way things were going to be, always tried to live up to familys expectations,work and that, Then i ended up with a head injury down the leftside of my brain, cheekbone smashed through my sinuses eye nearly poped, hte bone was snaped off near my ear, kept feeling very dismorphic ,Understatment, got into more trouble, stumbled over a police officer got done for assault when i went to lean against the wall never could get my words, cause of njury, Im a loner, with all the wrong traits, im on variouse medications at the moment, nothing seems to sort it, now im in a shared house i think, things go from bad to worse sometimes you know that pain ye feel, that heartache, can go onfor weeks, isuppose appearances give off a different persona, i got assighned 26 year old key worker lets say amy, but she used to come round for me, we used to ride to different appiontments, go to coffee shops, i used to say to amy there’s something i want to say to you there i am trying to untangle all my emotions like we were,playing at dating but not really to see if i, could get straightened out, i think maybe she was in expirienced, fresh, to her job, you know i’m not the sort of person to take, advantage but her big brown eyes used to stare at me, i was feeling positive, but all the crap i had been through was sort of eating ,me up ,i had begun, to like her to much it all ended up i lost my temper when my giro didnt come through, i felt like such an idiot in front of her, we met a few days later, she asked me how things were at home, before i go any further i was homeless for ten years, anyway i told her the bloke at home was crying, thing is he has someone his girlfreind, as we left the coffee shoop it was tipping it down with rain i was looking at amy and ran straight into , the back of a ford focus smashing the tail light we pulled over, gave my details (like i’ve got money) i didnt know that, earlyer she had been round when i was upstairs i think she took my lack of speech to mean there was trouble at home or something, it was those big green brown eyes that done it for me, i stupidly told her i had a crush on her she said no, no ; now i dont really drink that much so i took her answer as that ,later on i had the bloke i live with going mad say what are you doing sayin things about me (bully)all i said was that ,i just want to move out ., i sent her a text the next day, about my dentist appointment, all fairness she was inexpirienced, in the key worker field, and i’m just well’, cant say it here, it was just the prolonged eye contact, i just sort of felt massivly heart broken unable to express myself, the pain of a lost life is qiute large now i have gone and messed it up i dont know if im, going to get kicked out. lost a freind a lady freind said it would probaly taken as a complement. ive lost a freind I might stand to lose everything hostel and all that for the past 2 an half years i just feel like i really messed up again,sent 2 messages in total looked at delivery details. didnt go through what am i going to do it felt like i was going to explode i have always been misunderstood by people ..thanks .ian
Myths that Increase “Mental Health Stigma” and Decrease Compassion
A prominent myth is “stigma.” So long as we direct it against ourselves, we are abetting a prejudice we want ended.
Hi Harold,
Yes, I’ve heard that some people espouse that stigma “doesn’t exist.” However, it seems to me that these people are the ones that simply haven’t experiences it themselves. When someone leaves you because you have a mental illness. When people shun you because of it. Then you will know stigma and it will become all too clear that it is real.
– Natasha Tracy
Myths that Increase Mental Health Stigma
Can one be trained to reference overt discrimination as “stigma?” What are the consequences therefrom? In not calling it discrimination, whose purposes are followed?
Harold
Hi Harold,
Stigma and discrimination aren’t the same thing. Discrimination is an overt act while stigma doesn’t have to be.
– Natasha Tracy
As I have 1 suicide attempt under my “belt” and no official diagnosis, I know a few things for certain. If I try to get the “professional help” for my depression I will lose my job and house, because depression is a disqualifying illness in my profession. Also, my family is a bunch of judgmental A**holes. I was released less than 12 hours after getting my wrists stitched, no follow-up, no recommendations, no pills. Those in my family that know about it yelled at me. They could not believe that I was in any kind of pain. “You have a great life” kind of nonsense. I will never again believe that their pain at losing me could ever be “worth more” than the ending of my own pain. The only reason I am still here is a promise I unwisely made just after my attempt. One of these days, I might decide that keeping that promise isn’t worth the pain that is waking up every day. On that day, I will leave.
My life means nothing to me, and if it means anything to those who know me, they haven’t shown it.
This was such an interesting article to read. I have recently been diagnosed with a spondyloarthropathy (an autoimmune disease – basically inflammatory arthritis of the spine), and I wrote about it in a recent blog post.
The thing is, at the moment I feel the physical illness is worse, but as I say in my post, I think that’s because it’s new, unfamiliar and unwanted. I used to feel that way about Bipolar, but I got used to it, and learnt about it, and it became easier with time. I hope that this will happen with the arthritis.
I feel really inspired by your article because I can see that someone else in similar shoes has been successful and that gives me great hope.
-Sara
Dear Sara,
Thank you for sharing your life with me. I am so glad my story inspired you. If it did, than that makes these trials worth it. WE should definitely keep in touch. I would like to follow your blog–let me know how. To contact me about autoimmune questions or share information, you can visit my site jessicagimeno.com or find me on Twitter @JessicaGimeno. For all things related to depression, bipolar, or mental illness, visit Flipswitch (www.thebalancemind.org/flipswitch/podcast); twitter handle: @Flipswitchteens. You’re very brave and I imagine very tired. It’s admirable that you care enough to share your story with the world despite your obstacles. And yes I think that with every trial, there’s a temptation to think “this is the worst thing that’s ever happened to me” when the fact that you’ve already successfully managed bipolar means you have the strength to manage one autoimmune disease. The pain is different but resilience is the same. Best wishes, Jessica
You have myasthenia gravis, polycystic ovarian syndrome, asthma, and another respiratory illness, as well as being bipolar II? I’m bipolar II, Dysthymic, I’m diabetic type II, I have Sleep Apnoea and I’d partially deaf and getting deafer, but I can’t compete with you! If you were a horse you’d have been shot by now! :¬)
What a good job you’re not a horse or this great article would not have been written! Kudos, Jessica Lynn.
Dear Harry,
Thanks for reading and for the witty, encouraging comment. From now on, when I’m in excruciating pain, I will be thankful I am not a horse. One of the mysterious things about being human is that “human factor”–when people who have all the odds against them survive and thrive despite their obstacles. I interview lots of people who exemplify resilience by overcoming depression, bipolar, ADHD and a myriad of other obstacles (rape, homelessness, abuse, etc) on Flipswitch–you can read and hear more about the human factor at Flipswitch–www.thebalancedmind.org/flipswitch/podcast. For a more personal look at what’s going on, you can visit Fashionably ill: The Cancer & Autoimmune Girl’s Stylist at http://jessicagimeno.com. It’s an unfiltered version of my life. Plus I’m going to be interviewing women with different physical illnesses and asking them how they overcome. Perhaps I shall tell those with many illnesses to be thankful they are not horses? Best wishes, Jessica
Hi Jessica Lynn, I shall be visiting the sites you have listed – thank you for the links. When you visit those women I recommend only using the shooting horses joke if you know they have a dark sense of humour or, like a horse, they may kick you in the ass!
You will have gathered, one of my coping techniques is humour. I make fun of my ailments and how they make me feel or behave, because it gives me the feeling that I have at least some power over it all, or at least it marks my defiance! Also, I find the adage that laughter is the best medicine has some truth in it.
I am so sorry. :( You really got the double whammy. :P
People ignorant enough to say this is God’s punishment should go read the book of Job in the Bible. Or read “A Man Called Peter”, the part where his wife is sick and waiting for healing. (This Peter was the pastor for Congress at one point, many years ago.)
I have OCD and depression. And went through taking care of my Mom, who was in pain and had had a stroke that might as well have been a serious mental illness. Dad has Parkinson’s. Mom, and my frustrates, out-of-state micro-managing sister, brought tons of drama in my life. I already had a job and a toddler recently diagnosed with mild Autism. Dad was low drama, and because we didn’t know he had Parkinson’s, in part as I think he was hiding it to not be a bother, he got the short end of the stick. Mom died in November. Dad is still alive, but fading. He has good days and bad. I realize I have a form of caregiver PTSD. I can’t handle much drama anymore.
I have had it easy physical pain-wise. Never had real labor pains during induced labor. Finally had c-section ’cause the little guy didn’t want to come out! The wound needed packing, but the nerves at the wound site were dead, so that never bothered me. All my pain has been mental/emotional. And I guess Spiritual.
Again I’m sorry you’ve been given such a huge burden. May God help you with your burden, and may you always sense Him near helping to hold you up. :)
Dear SithSnoopy,
Thank you for reading and commenting! Believe it or not, I am encouraged by your story because selfless caregivers like you make the world a better place for chronically ill people like me. I have read the whole Bible so I do know what you’re talking about–many people have a distorted sense of faith and trials. They blame the victim because it’s easier to believe that bad things won’t happen to them since they are being good Christians. When of course trials don’t necessarily mean a person doesn’t have faith. If not for my faith, I would be very discouraged with juggling the different diseases. I do a lot with depression, autism, and OCD with Flipswitch-my mental health podcast/blog. visit it at http://www.thebalancedmind.org/flipswitch/podcast. I love to interview inspiring people who’ve overcome mental illness and many other obstacles. My other site http://jessicagimeno.com is a more unfiltered look at illness-especially physical illnesses. I hope to interview women of different illnesses and give makeovers to chronically ill. Thank you for your kind wishes for me. –Jessica
I have a mental illness and hubby has a physical illness. We often debate as to which one might be worse. I think I will show him this article when he gets home.
Dear Sarah,
Thanks for sharing! Your comment is very encouraging. You and your husband may have a greater capacity for understanding each other than other couples where only one person faces chronic pain. For more articles on mental health or my interviews with people who’ve overcome obstacles like depression, bipolar, ADHD, etc visit Flipswitch–www.thebalancedmind.org/flipswitch/podcast. My other site helps women with physical illnesses and is a more unfiltered version of me-http://jessicagimeno.com. –Best wishes, Jessica
Some people need a way of understanding what mental feels like. Such as wondering is worse or less than having a certain known physical illness. They go by what they have experienced in their own lives. Yet for others they have been fortunate enough not to experience a disease such as a mental illness or a severe illness. It makes it perhaps harder to understand either way.
I still think understanding what something is somehow can lead to a greater grasp of what it might feel like. We watched Shutter Island recently and i had to explain it to my hubby. Then I explained that was how delusions to varying degrees felt to me. It gave him a reference he didn’t have before and helped perhaps better than anything else. Just a thought is all.
Dear Debra,
Thank you for taking the time to leave a comment. Yes I think it’s human nature to compare–comparisons can be a good thing if it leads to both sides understanding each other better.
–Regards, Jessica