What I wish you knew...

What one thing do you wish family and friends understood about your headache or migraine?

That was our second community question. People came from all over to write "What I wish you knew..." comments to their family and friends. If you know someone who is dealing with migraine or headache symptoms, this page may give you a better idea how to support them.

First, one disclaimer. Being a migraineur myself, I know that the answers are not always the same - and sometimes I just don't know what I want! That means you need to be patient and understanding, and be ready to listen. And remember, everyone is different - what one person appreciates, another may not!

And now, what I wish you knew...

I wish you knew how incapacitating it is...

How debilitating it is! Usually, people do not understand the intense pain and neurological problems associated with migraine, so they think I should be able to function. - Cheryle, USA

That it is not just a headache that you can recover easily from. You cannot do anything when you have one and I mean anything!!! - Cheryl, Canada

I wish that they would truly understand how debilitating it is for me. Many think it is "just a headache". Until you have had a true migraine, you can't understand how much pain and loneliness the person feels having to deal these too often. I want them to go away so I can spend more time living. - Carrie, USA

That I'm not over-reacting when I say that I feel one coming on. That certain things are impossible during a migraine, i.e. driving, reading, paperwork, talking, holding a conversation, walking, working, etc. - Fran, USA

My mother is also a sufferer so she understands completely, however my fiancé nor my father rarely ever get headaches (and those that they get are usually self inflicted!), so I wish they could understand the severity of migraine and how badly it can wipe you out, that it is so much more than just a headache. And why I will never get drunk and experience a headache I did not have to have! - Vicki, Australia

How I feel - I have silent Migraines, so it's hard for my family to understand my other symptoms. Off Balance, not quite right, dizziness, fatigue, hard to keep thought organized, etc... - Maria, USA

The fainting that goes along with the headaches - Deeanne, USA

That suffering a severe migraine is the worst imaginable torture. But so many non-sufferers seem to dismiss it as trivial, and show little sympathy or understanding. Frankly, I wish that all these people could experience just one of these attacks for themselves! - Jenni, New Zealand

That it's more than a headache -- I'm sick all over and often cannot stay awake, no matter how hard I try. - Georgia, USA

That it's not 'merely' a headache. That it actually makes me feel quite ill. I can't do anything when I have a full blown Migraine. Most of my family realise this as they also get migraines. It's other people who don't understand including the doctor. - Clare, UK

I wish family and friends knew the extent of the symptoms one can have when experiencing a migraine. For example, visual disturbances, full body aches, etc, and not just my head hurting. - Jacqui, USA

That it is so much more than just a headache. Even though I may not look sick I still feel miserable, have no energy, and every little movement can make it worse. - Ellen, USA

I wish you knew it's "real"...

Photo courtesy of littledan77

I wish my husband would understand that I am not making it up!!!!! That I don't LIKE to have them and when I go to massage therapy,the chiropractor or whomever looking for RELIEF it isn't me trying to spend money on myself. That I am not addicted to pain killers and if I could find something to make my head stop pounding everyday I would do it. People at my job think I am making it up and frown upon me. After suffering an attack I am amazed at the work I've completed...and then there are some what the heck was I thinking moments in there too! - Angela, Canada

That I am not mentally ill. There are very few foods that I dislike, and I would like to be able to eat anything like most people do, but some foods DO trigger migraine. I do not have a psychosomatic illness. - Elizabeth, USA

I wish family and friends would realized that migraines are a serious medical condition and not something that I "cause" mentally. So many of my friends and family don't understand how debilitating migraines are. When I need to back out of a commitment because of a "headache", many don't understand it's not something I can get rid of with a "couple aspirin." I know they mean well when they offer me an OTC pain pill, but it also lets me know they don't realize the depth of my pain and suffering.

I once had a friend with me on a weekend trip and we shared a room. I suffered a high-level migraine with vomiting. She felt really bad after that and told me she never realized how sick I got from my "headaches" and apologized for not understanding. I appreciated her confession. Maybe I need to invite all my friends and family to witness one of my bad migraines? Then I know they would all understand when I have to cancel plans... - Barb, USA

I don't cause it! It isn't something I made happen. - Jane, Australia

I wish you knew I'm not avoiding you...

I really am incapacitated by my migraine.  It is not an attempt to avoid spending time with family/friends.  Migraine is not "just a headache".  It is an incapacitating neurological event. - Heidi, USA

That I am not playing on it in any way, shape or form.  That I wish I could live my life normally, play with my young children like other mums, keep house like others wives.  That this isn't an excuse! - Linda, UK

I wish my husband would understand that I don't get migraines "on purpose" or simply to annoy him.  They are out of my control.  I don't enjoy missing work for migraines, and I don't need grief from him on top of that.  I need support and understanding.  It's not "just a headache." - Susan, USA

During a migraine, I become very irritable.  I wish they understood it's not them.  Sometimes I just can't deal with all the pain.  I just want it all to go away. - Jennifer, USA

I wish you knew that it impacts my whole life...

I don't like to make social plans/or buy tickets to events far in advance.  Therefore I am a last minute planner.  This is at odds with most people who want to book dinner dates at least a couple of weeks ahead. - Sally, Canada

How absolutely exhausting (physically and emotionally) it is to live with a chronic illness. - Janice, USA

I wish they knew that in addition to living with the excruciating pain and the fear of it that i also feel guilt for not being there. - Cindi, USA

How much they interfere with everyday activities, even when I do not specifically have one.  For example, avoiding certain activities so I don't get one.  Being afraid to go to work because I may get one and not be able to take medication due to side effects. - Jennifer, USA

I would like for everyone to understand that the migraine attacks are so powerful and are making me unable to continue any kind of activity (work, eat, even sleep, etc).  This affects basically my entire life (at work and at personal level), as I am not able to make any plans because I might end up having a bad migraine. - Oana, Romania

And those who always have symptoms...

It is disabling and renders me non-functional. It is not "Oh, I have a headache today and I'll take 2 aspirin, it'll go away soon..." type of pain. It is everyday, 24/7, pain decade after decade, and varies only in intensity, location, and type. Even when the pain is mild, there are still myriad scalp and head sensations all the time. Living with chronic daily headache interspersed with classic and common migraines, is a full time job.

I live in two parallel different worlds in unison: the objective world with other people, where I smile, work, play, act "normal" and another separate world where I am consumed by stabbing, slithering, pulsating, pounding, beating, knocking... sounds and sensations. My head feels like a giant bowling ball balanced precariously on my neck, and the best I can do with all this is to manage preventive and abortive meds to make me at least functional, so that I can act "as if" I have a life. The term "get a life" takes on real meaning for me. I wish they understand that everything is a struggle, that chronic head pain is an invisible disability, and be patient with me. - Ranjan, USA

I wish that they understood how much I have to struggle to get through every day with these migraines, though I've learned to hide it well, and do everything in my power not to let it affect them. I wish they could be more understanding and helpful sometimes, and more than that I wish their were real resources available for people whose lives are run by these migraines. It is a real disease, I've suffered every day of my life, and I'm now 32 years old.

People with these migraines need more assistance in their lives financially, and in the home. People don't realize how debilitating these migraines are and how they hold the person with them back. I do very well myself; I have developed a very high pain tolerance, that came in very handy when having my children. For any soon to be moms out there delivering babies, the pain is nothing by comparison to these migraines. But back to the question. When i think of the things I've been held back from doing in my life, it's hard to accept... - Erin, Canada

That it never stops. Usually a level 6-ish pain 24/7 for over 1.5 years now. - Linda, USA

I wish my family and friends could comprehend the intense pain I feel everyday, all day, from tension headaches. Drugs, pressure points, sleep, massages, nothing helps, absolutely nothing. - Genevieve, USA

A few more things I wish you knew...

I wish they understood that I can't be there for them when I'm sick. I would like them to pick up where I have left off until I'm feeling better. - Kathy, Canada

How alienated I feel when my family does not understand how migraine affects me, regarding both visible and emotion symptoms. This, in turn, affects their view and opinion of me. - Peggy, USA

I wish my family could understand how much noise and light affects my headaches with the hope that they would be more sensitive to that when I have a headache. - Trudy, USA

Do not disturb me and question why I act weird because I use to force myself to sleep whenever migraine attack me... - Nysa, USA

Cuddles don't help, honestly, leave me alone in a silent, dark room and I'll be better in a couple of hours. - Darren, UK

I suffer from Silent Migraines, with Aura ... I wish my family would understand how hard it is for me to function, think quickly, motor skills aren't good, lose of patience - they think Mom's cranky - but that's not the case. It's difficult to function at full capacity for few days - and if I am not taking care of myself it could last several days. ...I wish my family / husband would understand, and give me the time to relax, nap - and he would take care of the everyday household chores and paperwork for me. It seems since my husband cannot see my illness, it doesn't really exist. - Maria, USA

A few more resources...

If you want to help your family and friends understand more about headache or migraine, here are some specific resources:

The Migraine Quiz

Links to info about migraine, cluster and common headaches

Migraine symptoms (it's not just a headache!)

505 Ways to Encourage a Chronically Ill Friend (book)

The Migraine Simulator

Understanding "invisible diseases" - The Spoon Theory

Photo courtesy of Life Sciences