It’s All in Your Head

It’s all in your head!” What a familiar refrain for those living with chronic illness, pain or disability. Doctors, friends, co-workers and family often make this statement when they can’t “see” what you are going through or find a diagnosis. The invisible nature of many illnesses and disabilities creates an atmosphere of suspicion or disbelief, even by those who are closest to you. People may say, “It’s all in your head” to imply that the person is just making up or exaggerating his or her condition. Many people live with the stigma of this label. Some even feel shame and believe so much that they themselves are to blame that they take their own lives.

Maybe it is “all in your head.” There are many conditions that exist as a dysfunction or disease of the brain. Depression, Alzheimer’s, schizophrenia, bipolar, autism, post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), epilepsy, dyslexia, multiple sclerosis, Parkinson’s and ADHD to name a few. These are real disorders and diseases even though they are unseen, and in many cases go undiagnosed or misdiagnosed for years.

Jeff Vankooten, a professional speaker and Invisible Disabilities Association executive board member shares his story below:

I have bipolar disorder. It has been my constant companion most of my life. It’s like a storm cloud that hovers nearby threatening every day to rain. I’m a different person now than I was before it “kicked in.” I’m more serious and less jovial. I’m more guarded with people. I mistrust my ability to make decisions. The varying highs and lows have created an inconsistent approach to life. Yet, in some ways, it has been a blessing. That may sound counter-intuitive, but I am a richer person because of it.

Here are what I find to be the benefits of living under the description of bipolar disorder:

Depth of Empathy: I can uniquely understand the despair of others, and listen with an attentive ear to those who are suffering. That depth of empathy resonates with people who seek me out to be a compassionate ear and persistent source of hope. God has used this illness and redeemed it for the benefit of others.

• Strength of Relationships: When I was in college, my roommate learned how to monitor my emotional health. He was not intimated by, or afraid of, my invisible disability. When he sensed I was beginning to spiral into depression, he would get me up and we would walk around the neighborhood together. The walks were special because he would always provide “Swisher Sweet” cigars. They are thin, short cigars with a flavored plastic tip. I’m not sure why, but they played a big role in my recovery. Regardless if you have an invisible disability or not, ask yourself who or what are your “Swisher Sweets”?

Though having bipolar disorder has strained some relationships and ruined others, the one with my wife has been solidified. Often marriages dealing with spousal bipolar end in divorce. It can be too much and take its toll on the stability of the relationship. It hasn’t been easy. Nothing of significance ever is. But my wife’s “Swisher Sweets” of patience, compassion, and yes, a swift kick in the butt from time to time, has been invaluable to my life. She gives me the strength to carry on and the joy to participate in life. I love her deeply.

• Embracing of Moments: Depression has a tight logic. I can make a pretty convincing case as to why everyone ought to be bummed out. It’s critical to me that I don’t stay in my argument. I need to break through the closed system of despair by embracing each moment of every day that makes up the totality of my time. I relish the moments spent with my children and friends. I savor every dinner and I enjoy every ride at the amusement park. They are all precious moments.

Education is a real key in learning about the illnesses people are living with each day. The best way to get this education is to ask the people with the disorder or disease themselves. Take time to learn the language of invisible disabilities. Take time to listen and not pre-judge. Be a friend and comforter, not an accuser. We all need to make it a safe place for people living with brain illnesses, disorders and disease to share their difficulties and triumphs. Let’s remove the stigma and shame and be supportive in any way we can.

They can’t just “get over it” or stop being depressed. If someone breaks an arm or a kidney fails, we don’t tell them to simply “snap out of it.” They need real help, and we need to make this world a safe place for them to ask for and to receive it. By listening, learning and loving, we can help them be Invisible No More!

By Wayne Connell, Founder & President, Invisible Disabilities Association, and Jeff Vankooten, Professional Speaker and Invisible Disabilities Association Executive Board Member.

This article was first published on Disability.Blog by Disability.gov. May 30, 2012.

RELATED ARTICLES:

IDA’s Invisible No More on Disability.gov

IDA’s It’s All in Your Head on Disability.gov

IDA’s But You LOOK Good on Disability.gov

About Jeff Vankooten

Jeff Vankooten is a professional speaker who helps people thrive in disruption and change. He also coaches people over 40 who want to harness their life’s experience into talks and products that leave a legacy. He is a native of Denver, Colorado where he lives with his wife, three kids and really big dog.

Comments

  1. Blaine stanziana says:

    Jeff, I published a book about my life with two traumatic brain injures, the title is Its All In Your Head,I have been told that my book and story Is the most incredible story on earth in modern times. When I sustained my first tbi in 1979 at age 21 the term traumatic brain injury was not even heard of.then in 1988 at age 30 I sustained my second tbi due to undiagnosed epilepsy from the first tbi. The first two lines in my book are A Head Injury Comes With A Life Sentence and The Only Diagnosis For A Brain Injury Is……HOPE. I think those two lines say it all.

    • Hello. I’m glad I found this website. I am so upset, feel so down and hopeless because I recently suffered two very serious MS exacerbations (that’s when your body attacks itself, or more specifically, the myelin sheaths, or covers of the various nerves throughout the body). I was put on two courses of high dose IV steroids. This helped the 2nd exacerbation go away (the 2nd round), but now I’m experiencing symptoms again (numbness in my hands, difficulty walking, extreme pain from walking, muscle weakness, worsening memory problems, etc,. etc.). At the time I had the 2 exacerbations (April & May of this year), I was only able to get into see my neurologist’s assistant, however, she took excellent care of me. I felt so lucky to have this neurologist and his assistant, and at that time, believed he was an outstanding doctor; a very cutting edge doc. My opinion of him has now shifted.

      I went to this neurologist last Tues. It took me 3 months to get in to see him, then he hits me like a mack truck by telling me he doesn’t think I actually had either of the two exacerbations I had (guess I was faking it, eh, when the rubber hammer they use to tap your knee yielded no results [my knee did not jump; barely moved despite her tapping my knees numerous times. Very scarey!]). He made this claim, on the basis that the 2 MRI’s he ordered did not show any NEW lesions (only the old ones) on the MRI’s. Therefore, he strongly implied he no longer thinks I even have MS.

      There aren’t any words to describe how I feel as a result of my neuro telling me this, but I guess you could sum it up by saying I feel abandoned, betrayed and scared. I guess it’s up to me (???) to figure things out; guess I am now stuck having to do a lot of research to try to determine what’s going on with me. Because something most certainly IS wrong with me, and I did not make up any of the very REAL symptoms I had during the 2 exacerbations, nor am I making up the very REAL symptoms I’ve still having. But who do I turn to? Where do I get answers as to what is going on? Me, that’s who, and maybe with any luck, the fine folks on this website.

      That is why this blog post resonated with me, wsp. regarding the book, “It’s All In Your Head.” As the author above states, doctors OFTEN will tell you “its all in your head” when in reality, they just plain don’t know what’s wrong with you. Here’s my question though; what makes these doctors (who appear to think they’re gods) lose their compassion? I don’t understand why they turn on their patients, with their bullshit, accusatory replies of “its all in your head.”

      Sorry this was so long, but I’m hoping that there may be some MS patients out there, who, like me “really are sick/have MS” and have had MRI’s that do not show (new and/or old) MS lesions on the films, YET, their neurologists still believe, or rather have the courage to still diagnose them with MS. And if that’s the case, and if by chance they live in the Denver, CO Metro area, I’m hoping they will give me the name of thier neurologist, since I apparently need a new one.

      Thanks in advance for any help any of you can give me!!!!

      • Hi Katie!

        We are so sorry to hear of all you have been going through! If you are looking for others with debilitating conditions to talk with, check out our social network. There are many wonderful people there with MS and other illnesses, injuries and disorders. Go to the Invisible Disabilities Community at http://www.InvisibleDisabilitiesCommunity.org

        We hope to see you there!

        The IDA Team

      • Hi Katie, There’s a book you might be interested in that a couple friends of mine have read and found very helpful. It’s called, Black Patent Shoes; Dancing with MS. It’s written by a woman who also has MS and has learned a great deal about how to help herself, things which the medical world apparently doesn’t know. Perhaps it can be useful to you. Best wishes.

      • Hi Katie,
        It may not be that you have MS. Antiphospholipid Syndrome has too often been misdiagnosed as MS. I suggest you find a rheumatologist or a hematologist who will test you for the Antiphospholipid Antibodies. I am sorry to say that APS is still a chronic debilitating illness and still requires constant care but it might be better than MS if you get the proper treatment. I have a friend in Wales who was diagnosed with MS and then found to have APS instead and now is able to walk again when she was nearly unable to do anything for herself for 12 yrs. Please get tested for APS. Some neurologists are knowledgable in APS because it does attack the brain and CNS, like mine does, but it does not with everyone. Most people have blood clots.Antiphospholipid Syndrome is also known by the name of the doctor who discovered it, Graham Hughes, who lives in London. You can learn much about APS by looking at their website. Dr. Hughes has published a patient guide which I found to be very helpful in the beginning when I was learning about my illness. You can google, Hughes Foundation and the person in charge of their patient advocacy is named Kate who is just wonderful. She has been helping me to find doctors who specialize in APS in the US since I can’t afford a trip to London right now. Please keep me posted on what you find and if it really is MS and not APS. God Bless, Belita

      • I’m glad I’m not the only one going through this. Was diagnosed 22 years ago and because of no new lesions in the last 2 years a new neuro says I might not have it but won’t give an opinion of what it might be. I am not in Colorado. Just wanted you to know you are not alone.

      • Your symptoms sound more like Lyme disease than MS, especially the pain and memory problems. Please lookup the term LLMD and explore the ILADs web site… also lookup MD Junction and find their lyme board. The testing out there is not accurate.. your labs need to be sent to Igenex for the right testing. I had mine done and it confirmed my symptoms. If only I had a family there to help pay for everything I would be better… But here’s to hoping you recover.

  2. Blaine,

    Thank you for the comment on the blog post. I do love your line that the only diagnosis for a brain injury is hope. I think that could sum up just about every Invisible Disability. I hope your book gets a wide readership!

    • Greetings Blaine and Jeff,
      I got run over by a van as I was walking in a crosswalk in New Ulm Minnesota. I was almost safe!
      God decided for me that I was to take a different road. I had started a low-income + senior citizen free tax service in New Ulm, MN. I was a tax accountant who found joy in adding numbers. But after suffering a T.B.I. — I could no longer add numbers correctly.
      I am now a CEO and Director of a non-profit corporation. Minnesota Brain Injury Force Inc. is the name I chose. Do not laugh too hard…Minnesota BIF !! My supportive husband insisted I call it that. I told him but look at the BIF. He said, “so what, with all the crap you have had to take to get where you are the name is very fitting.
      I now provide knowledge and support to brain injured survivors and their families. It is a lot of work with no pay. But when I can help give just a few brain injured survivors a ray of hope …I feel I have been given a purpose in my life. I have heard of your book and I might need to purchase it for our library. I also hear from lots of people the importance of eating brain boosting foods. Take care and may God bless both of you. Ms. Sharon Gieseke, Director of Minnesota BIF. HA! HA!

  3. Without health insurance it was very difficult to get any help. I have everthing you can imagine wrong with my spine. D.D.D: herniated disks at every level, sciatica, and the list goes on. Much happened while working but I just blew it off. My primary care told me it was all in my head ( my husband had recently passed away ). Blood pressure due to pain was over the top. I changed doctors ( a community healyh center ) and they also said the same. In over a years time I went to the e.r. in terrible pain at least a dozen times only to be told the same thing. I said it’s not in my head, it’s my back and hands. Unfortunately it took an overdose to be believed. Even then the first couple days in the hospital they still said there was nothing wrong with me. Finally, mri’s were done and a neurosurgeon came in and said I needed immediate surgery or I would be paralyzed because of all the neglect. My problems now are worse than before though I do have more use of my hands. I now have a doctor who listens and is very caring. But damage is done. I could go on and on. I’m sorry I didn’t have health care. I tried. Work knocked my hours back as soon as I requested insurance and I couldn’t afford private insurance. So now I’m living off the government, trying to get better, praying,bored not working, and knowing I’m only one of many in a similar situation. Listen to your patients doctors!! We aren’t begging for help because we have nothing better to do.

  4. Leslie Hoffman says:

    LESLIE HOFFMAN, STUNTWOMAN, TBI SURVIVOR

    As a stuntwoman, I expected to get bumps and bruises, much like any other physical Career i.e. Football Players, Hockey Players, etc. I also have had explosions go off near me or actually had small explosions put on my body to make it appear as if I had been shot, much like our Soldiers.

    Little did I know, whether the Director wanted me to hit my head, like the dead Cook in Clue, or a slight miscalculation on my part and ending up hitting my head, that I would end up with PCS (Post Concussion Syndrome), TBI (Traumatic Brain Injury) and PTSD (Post Traumatic Stress Disorder)

    I started noticing that I was dizzy, off balance and feeling unbearable stress. I did go to my Doctor, who did various tests and who sent me to specialists, who also performed numerous tests. These tests would come back normal or negative because no one was looking for TBIs.

    Finally unable to go on with my Career, due to physical injuries and these other unexplainable ailments, I filed a Workmen’s Comp Claim, which also included the injuries to my head. I also filed for Social Security Disability, which was, not uncommon, turned down. I hired an Attorney and filed an Appeal. With all this stress before I could go, my TBI and PTSD got the best of me and I suffered a nervous breakdown. Again, I was at the mercy of Doctors who have had no training in recognizing Brain Injuries and their symptoms. I was treated with antidepressants with only increased my anxiety and depression. There was a second opinion Doctor brought in who recommended that an MRI be done and that my medications could possibly be increasing my symptoms. This was noted in my charts but ignored, the MRI was not done and once released from then on all the Doctors and 2 other hospitals increased my medications. Finally electro shock therapy was done on my already injured brain. This all came about in 2003.

    Now in 2004, having headaches and vomiting became the common for me. We finally had the SSDI Appeal Hearing. My Attorney instead of stressing my physical injuries to the Judge choose to go after the mental disability I had suffered in 2003, the year AFTER my 2002 application for SSDI. The Judge award me SSDI but unfortunately in the finding part of his judgment he only states severe depression. He did not add my physical impairments even though Social Security has my severe bad back listed. He did award me back to 2002, the year BEFORE my breakdown.

    This, in turn, has cost me my Health Plan with the Screen Actors Guild Health Plan. The Plan is taking the position that TBIs do not cause depression. Had the Plan contacted Social Security, they would have known of my bad back and awarded me my Occupational Disability Health Plan. Also, if they would research TBIs and it effects, they would know that study upon study has been done on TBIs and depression, a direct results of my injuries on the set.

    I continue my fight about TBIs in the Entertainment Industry and in fact have helped several stunt people, who suffered TBIs, get their Pension and Health Plans. It is my hope that someday the Plan will change their minds in my situation; I really want to be an Advocate, not a martyr in the fight for the recognition of TBIs. Doctors need to be educated to look for the cause and not “mask” the symptoms of TBIs as the solution with drugs that might harm the TBI Survivor further. Education about TBIs is a must for everyone, so that there will be diagnosing TBI Survivors and caring for them properly.

  5. Hello everyone,
    My name is Belita and I suffer from an umbrella illness called Antiphospholipid Sydrome. This illness has caused some serious other illness which are just as rare as APS was once thought to be. Now they are saying 2-5% of the population have the disorder. It is often misdiagnosed as MS but over the past 8 years I have seen progress in getting information out about this illness. I was diagnosed in 2004 but my best hematologist, he retired in 2010 right before I was diagnosed with Chronic Lymphocytic Leukemia cause by the Antiphospholipid antibodies infiltrating my bone marrow. Anyway, he believed that I suffered from this illness since I was a child and that I had my first mini-stroke at the age of 9 and again at 13 and more at 17 and then after several miscarriages and difficult pregnancies I found myself in the hospital with a clot in my leg that stretched from my ankle to my hip and the area was directly in the path of a hurricane, Charlie, and my family had never lived through a hurricane and really had no idea what to do. It went ok with the hurricane because it actually turned towards land and hit the state nearly 100 miles south of us instead of the direct hit that had been predicted. I was in the hospital for just under 4 weeks and have been going down health-wise ever since. I don’t want to list everything about what Antiphospholipid Syndrome has done to me I find it more interesting that someone else has used my title, “It’s All In Your Head.” It isn’t actually my title but a short time after I was diagnosed my husband had a carrier bag made for me at a popular site where you can design your own t-shirts and what-not and sell it for a small profit. This bag was specifically bought for the purpose of carrying my growing stacks of medical records. On the front of it is printed, “It’s all in my head.” My neurologist had the biggest kick out of it when he saw it. He was the first person to believe me that I was sick and he is also the person who proved it. He has recently returned to the northern US to be closer to family but he made sure to point out that I am not making any of this up and that he has run all the tests to prove that I am actually sick. To hear that from a medical professional when you have been told by your own mother all your life that it is all in your head and refuses medical treatment when you have had a stroke in the hallway of a hospital. She had the gall to tell an ER doctor there was nothing wrong with me and refused medical treatment but that was back in the 70′s and I praise the Lord God we have made leaps and bounds in child endangerment and child neglect since then. It is a lonely place being sick, knowing something isn’t quite right and having nobody believe you. God believes me and that is the only comfort that I need now. Many people tell me I should write my memoirs but I wouldn’t know where to begin. Suggestions are welcome. ;)
    Blessings to you all,
    Belita

  6. Hello and glad I founf this site. I was diagnosed with Arnold Chiari Malformation Type 1 with an 8.5 cm tonsils.
    I noticed several years back things weren’t quite right. I would be driving to work and was seriously all over the road for 20 miles and so dizzy it took me a minute to get out of the car. Then out of the blue my Blood Pressure shot up to 215/110 with no reason why. Went to 2 doctors and now I am on 2 meds day and night, Dr ran 5 MRI’s and 1 CT scan to see if kidneys were failing – Nope good kidneys, when the MRI results came back is when she said I have secondary BP. I have headaches daily, right eye is like always looking through a cloud, pain and tingling down the left side of my body, difficulty swallowing(getting worse) can’t hold my head up very long to do computer work ( I was a Bookkeeper ) so quit my job and having trouble finding a job I can do now….I wear out fast and want to sleep alot….
    But, my problem is I am so sick of everyone saying well you look fine, are you sure you are not just (Getting older) with the typical aging signs and symptoms.
    OH another thing that really bothers me is I CAN”T REMEMBER anything at all….. and everyone in my family will say Mom / Honey I just told you that yesterday and roll their eyes, like I am faking it….. so angry…

    • Hello. I’m so sorry to hear about your health challenges. I actually am starting to have any of those symptoms myself (scary). I have Multiple Sclerosis, Peripheral Neuropathy, among other things, and even had a rhuematologist (a doctor, for goodness sake) tell me every time he’d see me, “well you look fine!” How thw h@)* are we supposed to look? When people would say that to me, I’d wish I’d had the “mozy” to suddenly mess up my hair and clothes, smudge my makeup up, then say something like, “There! Do I look like you think I should look (since I have a chronic diesase/condition)?” Of course that would be “rude” for ME to say that back to an individual, yet the person(ms) making the person who made the comment in the 1st place is making a rude comment…

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