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Expert Answer: When friends & family don’t understand Migraine

Question: How do you handle family and friends that don’t understand Migraine Disease?

Migraineurs miss appointments. We miss family gatherings. We request special food, special lighting, special medications, special changes to the lives of those around us so we can function.

We spend large amounts of time in doctor visits. We wear sunglasses indoors, we visibly gag at perfume. If we are chronic, we begin to look obsessed at the control of our environment so that we can control our Migraine Disease. In effort to control our disease, we are separated from our normal lives — our jobs, our ability to function, even from the people we love the most.

From the outside, we often look sad, weak, anxious, controlling, depressed, angry, self-serving or even selfish. Our needs are so vast and our ability to deviate from them so small.

This is a question that was asked in our forum this last week. I began to write the forum member my answer, and decided that it should be a blog post. This is an important discussion to begin because Migraine is a progressive disease, and I have some very personal feelings about the answers I’m about to give my readers…

The Migraineur’s perspective

It is a sad statement to make, but I would venture to guess that there are precious few chronic Migraineurs that haven’t felt the pain of a family member or friend who cannot manage — or chooses not to try to – understand what we are living through each day.

A Migraineur I worked with on Headache on the Hill 2011 in Washington DC put it this way. She said,

“I am a breast cancer survivor. Compared to my experience with chronic Migraine, breast cancer was a breeze. All the information is out there. Everyone understands cancer and its treatment and has compassion for the patient. The stigma of it is gone. The therapy ends eventually — there is a light at the end of the tunnel. The pain of the disease is treated vigorously. Migraine is nothing like breast cancer. The pain is so much worse and usually undertreated, nobody understands the disease or the patients, the stigma is overwhelming and there is no light at the end of the tunnel because our disease doesn’t go away.”

Her point was not that breast cancer is a breeze — quite the opposite! We all know how devastatingly hard it can be. Her point was to illustrate the grave difficulty in living with chronic Migraine compared to something as serious as cancer — a condition most people can understand. The legislators we spoke with that day were outwardly shocked at her statement, and it opened doors for the other patients there to speak and to be heard with different ears.

Our disease is invisible. It can’t be seen on a lab sheet or an x-ray film. With each test performed, our families hear the words “everything is normal”, yet we act as if we are suffering and are unable to perform even normal daily functions. Misunderstanding eventually leads to mistrust. Unfortunately mistrust is fed by some Migraine illiterate health care teams who have sworn to help us yet often doubt us, refuse to believe us, or sadly, even dismiss us. Our families see the dichotomy of a health care team’s statements that we are “normal” and our outward actions, and they are confused. Who should they believe? The word “normal” that all the trusted and learned doctors and nurses toss about so easily and often with smiling faces, or the unhappy, depressed patient who insists there is still something wrong and they are in pain?

Where does this leave us – the patients?

Keeping this in mind, it’s no small wonder that many marriages crumble when a Migraineur becomes chronic. Friends and family members slowly disappear. The patient becomes depressed at the downward spiral and loss of control of their lives as a result of something that nobody can even see.

In the next few posts we’ll explore:

  • The thoughts and experiences of loved ones toward our Migraine Disease
  • Those in our lives who want to understand Migraine Disease and helpful tips
  • Those in our lives who do not want to understand Migraine Disease and helpful tips

Need help explaining migraine to others? Check out “10 Things I Want To Share About Migraines” – an article that can be emailed, posted to Facebook, and printed

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • TC2013
    6 years ago

    It is incredibly depressing to have Migraines. They are so debilitating. It makes it even worse when you have family that does not understand them. I have certain family members that seem to think they are just regular headaches, and they try to downplay them by saying they get headaches (implying that mine are just headaches).

    There is a HUGE difference in pain between a headache and a migraine. Migraines can also last for many hours or days.

    I also get the impression certain family members (sister in law) think I am faking it. It makes me so angry too, because the pain is so bad, then to have someone think that, then spread lies to others about me in order to downplay it.

    They will claim they get headaches, yet talk on the phone for hours, laughing like nothing is wrong. Yet I have a migraine and end up sick in bed with the lights out, throbbing/pounding pain, nauseated, and an icepack on my head for hours after even taking my Zomig.

    At some point there is a strong possibility I could be homeless, due to heartless family members not understanding. Only an act of God would prevent that.

    I would not be able to hold a job with the migraines I get.

  • Ellen Schnakenberg author
    6 years ago

    TC2013 – I don’t know if this would help you or not, but we got so frustrated at the stigma and misunderstanding about Migraine that my son and I spent a year with the community creating a Migraine to help people understand its impact. Here is a link that will take you to it if you’d like to view it and share it with others:

  • Julie
    7 years ago

    If only I could get someone to get through to him. I doubt it would work. His skull is thicker than the base of the Hoover Dam.

  • Julie
    7 years ago

    I’m about at my wits end. I’ve had migraines for 25 years. Been married for a little over 30. The migraines were sporatic at 1st. Then early in 2010 they became daily intractible. Not from medication overuse. I can only use abortive meds 4 days a week and nothing for 3 days as I have been doing since I went to Diamond Headache Clinic in 2006-2007 to avoid headache rebound. I went on disability all the time my spouse saying it was a waste of time and to go back to work. I was denied, like they always do and I was told “see, I told you so, it’s a waste of time now go to work there’s nothing wrong with you”. But I appealed with the help of an appeals attorney. with the help of a good therapist and a good neurologist that specializes in migraines I won my appeal. All I got from my spouse was “that was just luck”. I said “no, it’s justification and clarification that I’m sick enough to be ruled as disabled. He still thinks I’m basically on a free ride and should get a job to add more income because SSD doesn’t pay enough. But onwards-On a “good day” if we can call it that my head pain can be at a level 6 and I can force myself to 1/2 way function. I’ve dealt with IBS, severe depression, panic attacts and agreed to have myself hospitalized in late July because I was not able to function due to very severe insomnia due to depression and was comptemplating suicide. So I was admitted to a depression unit, much to my husbands dislike, for 7 days. An embarrasment to him as he call it I was in the “psycho” ward. They worked on adjusting my meds to help w/sleep and depression and got serious individual help and group therapy. I felt I made progress until I got home and it all went to hell again. I never get any emotional support. He says he’s tired of it becuase it never gets better or goes away, it just gets worse. Well does he think I’m happy with it? NO! Now I’ve been dealing with other issues and I see my MD and they have done all kinds of blood work to rule out other diseases and ailments but now it looks like I might have Fibromyalgia. So after he works me hard over the weekend moving this and that and I get those bad muscle cramps and aches today I was so exhausted and my IBS acts up and I feel all flu like but I know it’s not the flu, he comes home and I didn’t get the “task” list done to his specification and he goes on a rampage and then comes up with a new one, that if I’m just so sick with so many illnesses that maybe I should just go into a home where they can take better care of me!! HELLO! I’m 50 years old and because I’m suffering Intractible migraines, IBS, Depression, PTSD, Panic Attacts, and now Fibro and have an A-hole of a spouse I should go into a home? Because he cannot see what is going on and cannot feel it, well I’d love to have him feel something let me tell you.
    Sorry, I just had to vent and release some anger. But I could not believe the things he’s said and done. And this is a person that took the vows: to love and to honor and to cherish, for better or for worse, in sickness and in health, for richer and for poorer forsaking all others until death do you part. If you know you cannot live up to those vows why even utter them. My dad, God rest his soul, took an early retirement to care for my mom until he could no longer do it on his own. He was so devoted to her. Then she had to go into a home. He never, never ever resented her for becoming so ill with CHF and Alzheimers and then stage 4 colon cancer. He never once blamed her for being sick, never humiliated her, belittled her, berated her. He was always emotionally supportive of her every step of the way. And here I get the total opposite-no emotional support at all. And I’ve been a good patient, going to my appointments, doing what I’m told, taking my meds as directed. My mom, her vice, was never a good patient. My dad did have a time with her getting her to the doctor and she was not good at getting her cancer screenings. I’m the opposite of that. But I’m treated as the leper. Go figure. I agree with cmvonhirdler, Migraine disease is a very lonely disease. I’ll take that up a notch. To me it’s the disease of leprosy in the year of 2012. It’s no wonder that people that suffer migraines have such a high rate of depression and suicide. The isolation and rejection from family, especially from the spouse that turns to such hatefulness is part of the problem. It gets to the point its too much to bear. The verbal and emotional abuse is too much. The venom grows like poison with gas that has a match lit under it and out of control.

  • Nancy Harris Bonk moderator
    7 years ago


    Your story is too familiar. I wish I had a positive note or two to pass on, but I don’t. You have to take care of you first, and do your best not to worry about DH’s incorrect thoughts on your illness. Forgive me if I am prying or I’ve already asked, have you tried counseling? If you need to talk more, email me.

  • kristisprague
    7 years ago

    Hey. I’m Kristi and am from Wisconsin. Bad head pain day today because a huge storm front is coming in.
    I lived much of your story for 7 years. I also have anxiety, depression and Chronic Intractable Daily Migraines. I have so much compassion for you. The man I was married to for 18 years and I have two kids, ages 11 and 14, and I am receiving SSD, too.
    My former husband was very supportive in the beginning stages of the Chronic Migraines. He was great! But, somewhere, he got worn down by the demands of parenting, housework and a full-time job. We were more like roommates than husband and wife. We rarely went out on a date or had quality time at home, we didn’t talk much after awhile and we had to intimate physical relationship. This was sad for both of us.
    His sad came out frequently as anger. He would berate me and put me down in front of our kids, while we were alone and even in front of my parents. He had no self control. I was very jumpy…like walking on egg shells around him, and the kids were distressed. Finally, it got through my thick head that his behavior was abusive.
    I was so afraid to get divorced. And, I still loved him so much, but he had fallen out of love with me. In the end, he pushed for a divorce. It has been a year since we signed the papers, and I was certain that I was going to completely fall apart. But, with support from loving parents and friends, that didn’t happen.
    I live in my own home, have fewer high pain days and surprise myself with what I am able to do…even parent! And, I have fallen in love with an incredible man who really, truly gets it.
    You are in an abusive relationship. I know how awful that is. If my experience could help one person live a happier life, it would have been worth it. Please get help…counseling, anger management for your husband, more counseling, lots of talking. If things flare up, and the abuse continues, I think it would do your health good to be out of his life. It is damn scary. You might you’d rather die. But, don’t die. You are a precious woman with so much to offer. Fight. You can do it. Love to you. Contact me, if you wish at: All my best~

  • BethBlue
    7 years ago

    It’s comforting to know that I’m not alone. I used to be so productive — both financially and around the house — and now I feel like I am a burden on the family. My husband is self-employed, and he has had a tough year, so it has been very difficult for both of us. I feel so guilty watching him struggle, and that just exacerbates my pain. This disease is so unfair and pervasive, and I don’t believe others understand just how lonely it can be to feel your brain draining away. I actually used to be intelligent — I skipped two grades! Now I am lucky if I can remember where I left my car in a parking lot, let alone the names of all of the U.S. Supreme Court Justices (which I’m supposed to know). I want my life back. I want my brain back. I want to be normal again. I’m not asking to be rich or beautiful. Am I asking for too much?

  • cmvonhirdler
    7 years ago

    what a comforting article! i’ve lost a lot of friends who have drifted away as my migraine disease has progressed. once i received an email from a coworker who accidentally cc’d me in on an email to other co-workers, accusing me of using up my sick days as soon as they came in for fun. i was just desperate for relief when i could get it.
    my mother hates that i’m on disability, and “just wants it all to be over” – like i don’t?

    between the darkness, the quietness, and the isolation (both self-induced and the rejection of my peers and family) – migraine disease is a very lonely disease.

  • Jerri Ross Stamps
    8 years ago

    I too, am blessed with a very wonderful husband who does his very best to support me. We had our 26th anniversary just a couple of weeks ago. He hears (and sees) all of the stigma around me and it affects him, too, and that’s something I wish I could change. It’s just a helpless feeling. I’m so glad I found this site and the people on it, you all are truly amazing and often are the ones I turn to for support. God Bless each and every one of you.

  • Jamie Amos
    8 years ago

    Hey, I have suffered from chronic migraines sinces I was 8yrs old I am now 26. I have never been able to live a normal life persay. I have only aleast 2 good days a week that I am able to act like I need to. My husband really doesn’y understand and at time he get aggravated but I totally under.Realld who would if you ahve never suffered from the awful pain. I will continue to see doctor and pray oneday they will find a cure. And hope I can live a normal life and be teh parent I dream of being. I pray for all suffers out their. I understand your pain.. God bless..

  • That M Word: A Migraine Blog
    8 years ago

    Ellen, this is a beautiful article. When I had to resign from my full time as an attorney job six months ago due to migraines, another associate said I could “just didn’t know how to handle stress” and she couldn’t understand the “big deal about a few headaches”! To put it in perspective, she is notorious for taking a day or two off to nurse a hangover. (As a chronic migraneur, I will likely never have another sip of alcohol in my life.) Experiences like that make me grateful for my very supportive family, friends, and virtual migraine community!

  • Julie Meibaum
    8 years ago

    What brought me to this page was not migraines but how friends treat you when they don’t understand your sickness. Especially when you have been very sick and they assume that you have ‘done them wrong’. Also when you can’t do things or go out, and you have to miss several important dates. It seems like you are ‘making things up’ or too sensitive, or that you don’t care about them, that you are being selfish.They assume the worst when all along you are thanking God that they are your friend, but they still don’t trust you.

  • Jaralinn De La Ossa
    8 years ago

    I am very glad I found this website! I suffer from Chronic Migraines (18-26 or more a month). My husband is in the Army and we move a lot, so it’s hard to find a reliable neurologist. I have one now that is really burning my toast! >:(. I too have had to reel in pain because I could not get a ride to the emergency room from family, while my husband was gone. I still do not understand why this has happened… more than once, and it’s hurts so deeply. The last two years my migraines have become increasingly worse and the support and understanding has increasingly weeded itself out to few and far between. I have left doctors for less than calling me a drug seeker, to not giving me adequate help. I am onto slapping down the hammer on family and friends who feel the same way. I live my life mainly in pain, I am done with the turning of backs and people being complete jerks. I know it’s hard for some to understand what it’s like, but comparing it to a headache, cramps, or a sinus infection really chaps my ass. I couldn’t be more lucky to have he husband I have, I would be lost without him.

  • Kelly Hibbert
    8 years ago

    Now that my headaches have reached such an intractable level, my family has had to suffer more with me. I used to shelter them as much as possible from the pain and now it is so excruciating my 2 young daughters have often found me weeping on my kitchen floor, praying for something, anything that would help. I feel guilty that they have to live this life when I’m the one who is sick. My husband is very supportive but it hurts him to see me this way, he deserves a partner not a disabled mess. I understand when his frustrations reach the boiling point, I reach that same point every day. I find it difficult to schedule anything in my life that cannot be answered last minute yes or no and wishing that when I can’t make something I didn’t feel like an outcast at the next event. I was 15 when my headaches started. 21 years later they are beyond anything I can described. The pain and nausea run my days and I find it harder and harder not to resent be afflicted with this disease.

  • Danielle Turney
    8 years ago

    When I worked; fellow employees’ would talk behind my back and say that I was “faking” to get attention. Even when the ambulance would arrive and take me to the hospital. There were countless days when friends or management would have to drive me home from work, because I could not even see to drive. My own mother has issues with my so called “migrianes”. She tells me to suck it up, don’t think about them and they will go away. Even though she has seen me in a full blown migraine, she thinks I have the ability to live a normal life. My dad knew my pain was real, because he too suffered with migraines. My mom’s mom ; who I lived with, was with me during my first episode. She packed my entire head in ice and held me as I laid there and cried. When I was married; my son’s father found my migraines inconvenient for him, he didn’t like leaving his buddies to run me to the emergency room.
    As of October 2005, my doctor decided that I could not work any longer and filled out forms for social security and declared me disabled. I live in a blacked out bedroom, I wear sunglasses when ever I am in sunlight, there are no scented products in my home and I keep my freezer full of ice. My son (who is 16) knows which meds to give me when I can’t move due to the pain or from being sick to my stomach. He has had to grow up seeing me this way and I feel horrible for that. Each year I only get worse, when he was a toddler I could do more with him. By the time he was 8 years old, he had to call 911 for me. I still went to soccor games and school events, when I could. By middle school I was more or less a shut in, I stayed in my blacked out bedroom more of the day then not. He is now in high school, I only leave the house once a week regularly to grocery shop. I try to come out into the livingroom, into the day light when I can. I know my son has been effected and that kills me inside; but out of my migraine nightmare, I know he has become a very compassionate young man. Now my only fear is, what will happen when he leaves for college? I have no one else to help me or care for me when I am trapped in my bedroom. Just to give you an idea of how many migrianes I get, when I worked between 2002 to Oct 2005 I missed over 150 working days, this didn’t include my regular days off or vacation days.

  • Julie
    7 years ago

    Danielle, I am so sorry you suffer this way too. It is a shame you’ve been treated so bad and it’s horrible. I will keep you in my prayers. Please take care.

  • dshermjr
    8 years ago

    Thank you for this wonderful story, my migraines have made me so misunderstood. I recently had a teacher tell me that he thought I was a jerk because I wear sunglasses indoors. All I can say is continue to try & educate people about this disease. I have the problem of pride, not wanting tell everyone about my constant headaches, but once I began sharing my condition I had more people replying with remedies I could try

  • Jessica Henry
    8 years ago

    No one EVER understands my migraines except my mom who gets them herself. Its very difficult. I feel if I had cancer or diabetes, they would understand…..

  • Sara
    8 years ago

    I’ve often wondered if it would be easier to have a more serious, but well known disease like cancer. Thanks you for putting this in writing for me. It’s so hard when your family and friends are sick of you leaning on them all the time, when the insurance companies deny your claims because chronic migraine “doesn’t affect your ability to work”, when you end up in the ER in your vacation, when you just can’t figure out how to be in pain for yet another day.

  • Julie
    7 years ago

    I feel the same way-I think it would be easier to deal with cancer. People treat you better if you do have cancer, but they treat you like dirt if you have Migraines. And your correct, meds for cancer are not denied as often as meds or claims for migrianes.

  • Audrey James
    8 years ago

    I have been blessed with a wonderful family that has been there for me to help fight this disease. I feel guilty that this affects their lives also, my husband has been by my side and never doubted the pain I was in and he and my parents have made sure I was taken care of. Thank God they have been there because their have been many time I just wanted to give up, the doctors just keep giving you drugs that leave you lifeliess but on the other hand you hurt so bad you just lose hope and faith that things will ever get better. Thank God my migraines are about 50% better with physical therapy after 6 miserable years and about 23 doctors later. Good luck to all my migraine friends I hope you find some relief.

  • Vicki Gewe
    8 years ago

    I come from a long line of chronic migraineurs, so until recently, I never had to deal with family disbelieving me, only friends, which is much easier to take. That is, until my brother and sister-in-law visited from Brazil this summer and actually refused to take me to the doctor for treatment because they were certain I was lying about being in severe pain. Because both get occasional migraines, they insist on interpreting my experience with a 13.5 year constant migraine in the light of their once every few months migraine. As chronic migraineurs know, we have to force ourselves to do things the average migraineur could never do merely because we have no choice! But we will have to pay for it later! I wonder whether my brother realized that in calling me a liar, he was also calling our mom a liar and her parents as well! Even though my brother watched while my pain has gotten worse and worse over the years, causing me to be forced to move back in with my parents, my brother doesn’t even have a clue and had wounded me very deeply! I seriously dread their spending all of November with us, since they’ll be at my parents’ home too. I’m making plans to stay with friends if it becomes necessary, even for Thanksgiving. That’s how much I dread having to face a brother who is convinced I’m trying to live a life of ease by faking migraines I obviously don’t have!

  • Rachel Z
    8 years ago

    Thank you for this article. If only more of this sort of thing could appear in the general press and more people DID understand. the stigma and lack of understanding, the compromised relationships and friendships i’ve lost are only second to the daily pain.

  • Elaine Axten
    8 years ago

    when I was a kid I got nose bleeds. so much sympathy! yet, no pain, just a lot of red stuff. I have often wished migraine had a visual indicator like that.

  • Inger Jackson
    8 years ago

    I just found this website and am so happy to have found a place where someone understands what I am going through. Thank God.

  • Patricia Berry
    8 years ago

    I was glad to read this and happy you found it. It is very informative, and I hope family and friends would read it.

  • Megan Kaye Freeman
    8 years ago

    I have been blessed with friends and family who may not understand or get it but they reliase it’s real. I have also been blessed with this stroburneesson bothsides of te family to push past pain (though there are times I just can’t) I’ve never had anyyone who is really important to me it off. I don’t do doctors alot I just don’t like them. I work in retail and a lot of my coworkers get migrianesI prpally list 20 in the store easy we even have migraine talks. I also deal with some headaches in strange ways that don’t make since to others sometimes (driving with one especially) I listen to music not loudly and not talking or commerials but something with a beat. The reason is I have excellent and sinsitive hearingwithout a headache so when I develop one it hitians every sound (and often small anoying sounds that I have learned to tune out ushally are triggers for one. Like crickets, appliances and so forth when I have a headache I can’t block these sounds so I focus or try to focus on music or something with a beat that I can tap with and use as a blocker. One of the worse things for me is I don’t trow up I just can’t other than water strain(and we are talking just spit up really from drinking to fast I have threw up less than five times the majority of those were due allergic reation to a pain medication(for a sergury). Sometimes I am so sick with my stomach from them I waish for the ablity to puke my guts out.

  • Dina Issa
    8 years ago

    You learn to deal with the pain and migraines in general but it’s hard to accept the consequences that they have on your life and those around you. I feel better though if I just tell everyone to get on with it without me when it’s a debilitating migraine (like the one that I had today!). My husband used to tell me that he won’t go out without me but now I tell him that I would feel alot better if he just did. The way I see it is why should he suffer becoz of them? Thanks Ellen for an interesting & very relevant post..

  • Shelly Ramcharan
    8 years ago

    Wow! I normally feel as though no one understands, but after reading..I feel as though I am not the only 1. My life has changed so much…even though its “normal” you said… No one understand the pain…

  • Lori Todd
    8 years ago

    Why is it that you hurt so bad you cause hurt to them that love you? I spent another night in the ER the Dr said go and have them admit you and do the DHE treatment well get there and there is only one hosp in the Phx area that has the med , to they send some one to get it. In the mean time you lay there hurting and to the point that I got up pulled off all the wires and was getting dressed and going home. The love of my life did all he could to keep me there once that meds got there. I was not so nice.. These are taking over my life. Being 41 and now dealing with these from the age 14 I just want to make it go away. I was so pissed that I said it would be best to just take my head off so that it cant hurt any more. I was shocked the nurse said that I could end up on the other side of the hosp (sike ward) nice.. I know they are just do what they need to to try and get it under control , but unless you live with these you have no idea..
    Helpless in AZ…

  • Lisa Fiedler
    8 years ago

    Yep, pretty much…

  • Connie Fisher Nienhaus
    8 years ago

    Along with migraines I have vertigo 24/7. its is a challenge daily, weather, noise and smells ca really effect me, some of my family are very understanding and my girfriends are so sweet and helpful too, it really makes a differnce.

  • Maureen Baxter Douglas
    8 years ago

    I know I don’t tell him enough but I am truly blessed with a wonderful man in my life. My husband did not marry a woman who had this many migraines. I only had them on occasion and could usually work my way through it. I pretty much have them all the time now. He supports me more than I could have ever hoped. We will have been together 18 years in November and he becomes more understanding all the time. I am blessed to have a lot of support from my friends and family. I don’t know if that is because over the years God has weeded out the ones that were not there for me anyways or not but I am truly blessed. I even get a lot of support from my job. I know so many don’t. I have heard the comments there is no way that she could have a migraine and still do what she does and truthfully I cannot explain how this works for me but it is who I am. I was a single parent for a while and you go throw up and keep going. That is just how it is. For me to stay home in bed it has to be horrible.

  • Alex Perez-Estrada
    8 years ago

    I can totally relate! Thank God for the amazing husbands and support system He sent us 🙂 Hope our migraines get better soon.

  • Audrey King
    8 years ago

    I am forever grateful that I have a husband who understands, he gets migraines, but no where near the extent that I do. What a relief for me to have the compassion and concern that I finally needed. He understands when things are not done, when he comes home and I am in bed (he knows why without having to ask). Now that I am getting medical treatment from a specialist, my life seems more normal. But a comment from a sister left me hurt and defensive when I was visiting my dying mother in August. A situation arose and I had the solution for it. My sister looked at me, because it was tied to my migraines, and said that she never thought she would be more grateful I was a hypochondriac. Forget I am seeing a neurologist and have a diagnosis, they still just do not get it.

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