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Friend and Family Support of Chronic Migraineur and other Invisible Diseases

This is my first post, so a nugget of info about me.

-I’ve been suffering from CM for the last 20+ years. but the last 6 have been about 25 out of 30 days a month.
-I’ve been on disability for 5 years
-prior to that i had a thriving career in Healthcare

So this is a deeply personal post for me, so I’m sorry if it’s a little to much for you…I’ve had a lot (medically) going on lately. CM is not my only health issue but it is on the top of the list, it demands full attention! I haven’t felt i was in a good place to write, but with the encouragement of my husband he said this is the perfect time to write! And so over the past few day I have tried to put this together when I can think with some clarity. So here we go:

In my experience, even when you’re perfectly healthy the majority of the population struggles with support from family and friends. When you’re sick you would expect that those family and friends would rally and come together to love and support you.
And some do, initially, they all want to help, however understanding what we go through on a day to day or in my case hourly can frustrate even the most loyal friend and family members. I am not normal, I am not dependable, I cannot make plans because I never know how I will feel, if I do make plans more often than not i have to cancel. I feel horrible for this, but i cannot control it. At first everyone says they understand, they say ‘let me know what they can do’ but then the calls and texts slowly start to disapate and then stop completely.


For me, this is sad, frustrating and yes makes me pretty mad. When i was healthy I was helping as much as I could. Everyone swears up and down they will be there for you. If I think about these people or relationships lost I spiral into a pretty dark place. And of course I don’t dare to cry or ’stress’ because my already daily migraines will only get worse. But the stress of abandonment from friends & family often results in a trigger or weeks long migraine.

I know my loved ones mean well, however, they are as tired as I am (albeit in a different way) year after year of sitting in the hospital or in the ER. Driving me to more doctors appointments than I can count and all the worrying…so much worrying. Like many of you, I have more than just chronic migraine’s (as if thats not enough) I have not been able to work a job that I adored for many years and I have had more than 14 procedures/surgeries/hospitalizations in the last 2 years and sadly did it mostly by myself with a little help from my wonderful hubby and daughter when they are not working. And where was my family and friends….😢

So for all of you that are going through this or something similar I’m sorry, I understand feeling let down, but look how strong you are doing it all! And to those friends and family members, we need you more than you know. We are not the best company, sometimes we can’t even form a complete sentence but we do need you, even if your just sitting next to use. CM is a disease, we are in pain, yes our head hurts but so does our body, we have memory issues, need help making decision, cooking, I could go on….

I hope someone out there can relate and I’m not talking to a black screen 😊 Thanks for reading

~The Migraine Chronicles

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

Comments

  • Lervone45
    1 year ago

    I so can relate to what you’ve been going through! I was diagnosed as having migraines (with aura) along with a heart murmur at age 19,I already had other medical issues going on,but adding migraines was the pits for me as it has never left me,totally robs me of my days and I have missed so many family related events due to this. Friends?? What friends stuck by me more like.. No one did as they didn’t like seeing me that way or gave up on asking me to hang out with them due to me having to cancel plans. I have the loving ongoing support of my hubby and 3 kids including two fur babies (cats). Without them I wouldn’t have been able to cope. I haven’t worked since my eldest child turned 4 years old. Thankfully I don’t need to and I just take care of family stuff on the days I am migraine free. Last one I had was about a week ago,where I temporarily lost vision in my left eye maybe due to stress,since I’ve eliminated most trigger foods,but if they are weather related ones not much can be done about them. I mostly allow my migraines to run their course and hope they don’t stick around for 5 days running(the ones where I lose the ability to walk or have no feeling down my left side are a worrying concern for me and my family. (they aren’t strokes as far as I know, I’ve had 3 T.I.A’s in the past) I used to be on a migraine preventative (Sandomigran)for up to 7 years but stopped using it when they acted like a sleeping tablet and just made me drowsy and also made me gain weight. I am yet to find another doctor to help me. Migraine fog is the worst!

  • ccf23
    1 year ago

    Migraine Chronicles, thank you so much for sharing your experience. I feel like I am repeatedly mourning all of the friends that have faded away and the career that I used to have. To be home sick, alone, and friendless is unbelievably bleak. I have 2 friends left, but not close. My family is not near by & runs hot & cold but thank goodness they still ask me how I am even though they know what the answer is likely to be. I really can’t think about out the losses because it brings me to my knees & honestly I prefer physical pain. I didn’t expect someone to write about this experience. It is very powerful. It shouldn’t have happened to us but we go on. I try to focus on the good things and the little things that make each day bit brighter. Wishing you the best.

  • lisasueq
    1 year ago

    I could so relate and empathize with your post. I, too suffer from CM. I’ve also been unable to work for almost 2 years. I, previously defined myself as many things, including a nurse. Now I define myself as mostly a patient. It’s very depressing and discouraging. I definitely am much improved from where I was this time last year, but I still don’t see myself being well enough or dependable enough consistently, to actually work. I find myself often faking feeling better than I do when friends and family ask me how I am, because, quite frankly, i’m tired of seeing the dissapointed look on their faces when I say how crappy I actually do feel. Only others with chronic conditions really get it. Thanks for the opportunity to vent here!

  • sbailey61210
    1 year ago

    Everyday I feel alone, like no one understands what it is like to suffer from CM then I come here and I don’t feel so alone. It’s brave people like the writers on migraine.com and the entire Migraine community that are supportive, open-minded and nonjudgmental where it seems some family, friends and colleagues will never fully understand what its like to walk a day in my shoes. Here I read your stories and I know there are others that share my feelings and experiences. Some days are worse than others… Like when family and friends start in on me bc i have another CM, they say… did you try this or I tagged you in this post to help on FB, or of course you have another headache. I have had CM for over 15 yrs, I am tired of saying what I have tried to remedy my illness, the hundreds of things that didn’t work, trying to explain that my symptoms are more than a headache. It would be nice for them to try to understand my CM, how it affects my life and makes me feel. I never know when I am going to get a CM, how long it will last 3 days at least, how painful it will be and which of my senses will be thrown into oblivion. I am afraid to leave the house most days. I also don’t like to make plans bc I don’t want to disappoint anyone.
    I am just so tired sometimes, alone, want curl up and hide from the world. AND then I read articles from here that makes me feel a lil less alone. I can’t thank everyone for their sharing their stories. Sending ghost hugs to all!

  • Joanna Bodner moderator
    1 year ago

    @sbailey61210, Well I just wanted to take a minute to to say how special it was to read this comment! Knowing our community is here for you when you need it most is so wonderful to hear. We sure understand just how isolating, debilitating and simply difficult life is with migraine and thank YOU for being such an amazing member and you too letting others are not alone in feeling this way. Sending virtual hugs. Nice hearing from you & always feel free to reach out especially when you need it most. Warmly, Joanna (Migraine.com Team)

  • snorkiefree
    1 year ago

    I can completely understand and empathize. My background was in the medical field and always finding the root of a problem is usually the key to the cure. Not with chronic headaches because finding that root is often not possible.

    I take care of my husband who was diagnosed with chronic headaches; every specialist I’ve taken him to try but the same conclusion here is an opiate. He then tried for well over 2 years acupuncture and electro-acupuncture and had some relief from these procedures but depending on which headache it is 10 minutes after the treatment the headache is back. However, for some headaches it does work and is definitely worth a try if you haven’t tried it.

    At least now most doctors don’t treat you like its all in your head! Pun intended.

    The pain specialist who said well you have many types of headaches so if we could figure out how to control one then another maybe we’d get ahead of the pain. My husband began Botox in June had his second set of injections in Sept. and while I do think Botox does help the intensity it’s not a cure for all.

    We both have lingering affects of West Nile so our immunity is compromised and we have a form of myalgia that makes the body hurt all over. The chronic headaches and pain contribute to the body’s ability to resist flu bugs etc. His mental state is good but we work to not make plans because we can not keep them most of the time. If we try we end up paying for it months after going somewhere. Others who don’t have any medical background have no idea what it is like to live daily with pain, illness, and feeling unable to contribute to society. Our retirement years were not planned to be this…but thank God we have each other and love being together.

    The new CGRP drug coming out next year does look promising. But I do like what the pain specialist said as part of my husband’s headaches come from a nerve in his neck or bone spurs on his neck and when his neck goes out immediately explode into a headache so it’s hard to know it’s the neck that is out. We’ve found the therapy from a chiropractor with laser therapy has helped with his neck problem so hopefully over time we can control he neck part causing headaches.

    Knowing the triggers if you can diagnose them for each headache does help…I guess it defines the pain and maybe gives one an idea of the best action for relief.

    My heart goes out to anyone and everyone having this disease but know you are not alone and medicine is making advances in this area. In the meantime be kind to yourself, breath and breath deep as when you are in pain we hold our breath which resets our brain chemistry. Hard to believe something as simple as breathing could be a trigger but it is…to breath correctly you need to take the breath deep into your diaphragm and push our lower belly out filling your body with air then slowly push it back out and up your body. Do this for at least a minute upon waking and during the day and see if this helps you.

    Our daughter is getting her doctorate in Traditional Chinese Medicine and has taught us that not only Western Medicine has answers…and there is a place in our bodies for both forms of treatment. Everyone is different and what works on one may not work on you but if it does and this helps you one of my prayers will be answered.

    Thank you for reading and know you are not alone there are others out there who do care.

  • kimmersutphin
    2 years ago

    I’m on disability also. Had a thriving career as an epidemiologist in bioterrorism. I watched myself and my family have to suffer for many years. My head has hurt since I could tell my parents my head hurt been in the ER more times than I can count now to get treated like a druggie so I stopped going to the ER for help. I just now started going to the ketamine Clinic so I’m hoping that that helps. I pray for all of you who suffer and all your families who suffer along with you. I’ve had to cancel more events and back out and more than once then I can count over my years. I’m shocked at how my family and friends have stood next to me during all this. And I feel bad that each time I have to cancel on them. Thank everybody for being there especially in the middle of the night when I can’t sleep because my head. It takes a long time to recover from a migraine my body just gives out

  • cindyd
    2 years ago

    I agree with what you have said but in my case my family ia extremely aupportive. I appreciate people trying to help me but I am so tired of hearing, “have you ever tried _______?” They just don’t understand that I have been asked that so many times as do all migraine sufferers. I am so tired. I am laying on the couch right now and I so sick. It is pouring rain outside and I live close to San Francisco so the baronetric pressure is only one of my many triggers and I am miserable. It helps me so much to know I am not alone and crazy and that orher people do understand what my life is like.

  • Leslie Coutsouridis
    2 years ago

    Can you say what kind of medical assistance you get?

  • Migraine.Chronicles author
    2 years ago

    Hi Leslie,

    Was this question for me or someone else that replied?

    Thanks

    ~MG~

  • Leslie Coutsouridis
    2 years ago

    Oh yes I can relate. I’ve had chronic daily mig for over 40 years. People don’t think to come to help me …Its too chronic, it’s the way I’ve always been…. But If I lost my husband I’d need to hire some kind of flexible help.to drive me, shop, cook….take care of me when I can’t. I couldn’t get disability benefits cuz I have. A part time flexible job that I love doing.

  • litoria76
    2 years ago

    I understand where you are coming from. I’m unfortunately in the same boat regarding CM and the loss of ability to work (still trying to get SSDI), friends, and family support. I stopped going to the ER for migraines years ago, I got tired of them not believing my pain and treating me like a drug seeker. I’m on medical assistance and living with my 75 year old mother. Even she admits she doesn’t want to ask me how I am because it’s never good. I also have other health problems, physical and mental. I’m glad to know I’m not alone but also sad that so many others are having to live with this daily pain!

  • Leslie Coutsouridis
    2 years ago

    Can you say what kind of medical assistance you get?

  • Kristy
    2 years ago

    It’s funny how you read a story, and it’s like someone wrote it for you. I had a career in the medical field I eventually had to give up after 14 1/2 years of chronic migraines. Now I am on disability, my friends and family have disappeared. The few that I still have, my husband, my son, my sister. They try, but it’s alot. I’m happy most days if someone just asks how I am doing. I think they are afraid to ask, because they know the answer. It’s frustrating, but just knowing there are other people like me, like you out there helps. Feel better!

  • Migraine.Chronicles author
    2 years ago

    Hi Kristy, thanks for your reply. A few days ago i had the longest reply ever to you because like you said, its like someone wrote it for you. I was going to delete it but went back and read it this morning and decided I would post as sort of a part two, to everyone. I hope your have a decent day

    ~Migraine.Chronicles

  • annabellaa
    2 years ago

    Hiiii! I am experiencing the same situation all of my friends and family have disappeared and no one contacts me anymore. I’ve been known as the flake but they don’t understand I can get a migraine any second so on top of having cm I feel alone combating this problem

  • Migraine.Chronicles author
    2 years ago

    Hi Annabellaa,

    I’m so sorry you’re going through this too. And I know deep inside you know this but you are not a flake! You know your body, You know your triggers, and it is not our fault that others do not understand us because of our disease, it is 100% out of our control as to when we will get hit with a level 3 or a level 9. If you like me you have learned when to play it safe and when to just go for it and know when you will pay for your play☺️ If you even need to chat feel free to message me here or on Instagram. I certainly don’t have the answers, but I am home pretty much 24/7 unless I’m at the Drs. Wish you the best ~Migraine Chronicles~

  • Nancy Harris Bonk moderator
    2 years ago

    Hi Migraine Chronicles,

    Thank you so much for sharing your very personal story with us. I think you’ve expressed what many of us feel and experience.

    It will be terrific when people understand migraine is a disease, not a headache!

    We look forward to hearing more from you,
    Nancy

  • Migraine.Chronicles author
    2 years ago

    Thank you for this forum Nancy, just writing and verbally expressing this has been quite helpful. I’m looking forward to writing a few more stories (hopefully with less typo’s) lol. I think they are very helpful!

    Kind Regards,

    ~Migraine Chronicles~

  • Migraine.Chronicles author
    2 years ago

    To everyone that has commented and replied thank you!!! I really thought I was the only one struggling with this issue. Just reading the comments has helped me more than you know. I truly encourage you to write your own story, you never know who it will help!

    Please think f this as a part 2 or to be continued

    I do you know what it’s like to read something and it feels like it was just for you!! I think that’s why I finally decided I would start writing. Historically my medical career included physician education auditing & ICDcoding. So I feel like I have this brain that has all this information that I can put to some sort of use and I see other people write things that fit so perfectly into my life and I thought I would give it a shot too.
    I’m so sorry that you’re grieving due to CM and family that’s pulled the Houdini act I know they don’t see it that way but that’s how I feel with mine. I’m glad that at least you have your husband, son and sister around so that your not by yourself. I think there’s a whole group of us struggling with this every day.

    I’ve tried to explain to my family & friends. I think they want to understand but first they need to understand CM. And that is so difficult in itself, I still have days that I don’t understand why and I live it 24/7!
    If I had to explain something to my family (again) I would explain that a migraine is not just that ‘1 -3 day migraine everyone thinks of, its not just pain in your head. It’s so much more, the symptoms are so much more, knife behind your eye, ringing in your ears, facial numbness, cravings, Aura, sound and light sensitivity, facial drooping….you can add in your own symptoms.
    But I think one thing you can explain is the stages of CM. Over and over until they get some semblance of what the migraine is like, its what your body goes through fighting the migraine, w are in an all out battle! First we have the ‘Pre migraine phase, the actual migraine and them Postdrome.

    * Premonitory or warning phase
    * Aura (not always present)
    * The headache or main attack stage
    * Resolution
    * Recovery or postdrome stage (or I like to call the hangover without the wine/cocktails or any fun at all lol

    During Postdrome the fatigue and the toll that it takes on your body is just as bad as the Migraine, for me most of the time, and i swear it always takes me by surprise!! But your body has been fighting for days or like me weeks with this invisible disease

    And then I remember the old me who did it all and honestly that’s you I remember to and I grieve for that person so my goal is to share my story, be completely honest okay maybe not completely (that will be a work in progress)I will just be real and to be available to anyone that may have questions that aren’t specifically medically related because I’m no expert clinically. I appreciate your comments, AS THIS IS A PROCESS AND LEARNING EXPERIENCE FOR ME AS WELL.

    Enjoy the rest of your week and I hope you feel better as well.

    ~Migraine Chronicles~~

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