Family has no empathy
I have kept quiet how hard it is to deal with almost daily headaches or migraines because it seems like no one in my family understands. I feel like they think I'm making up how many migraines I have. Because it has gotten increasingly worse as I got older. Not understanding the why myself I thought that maybe I'm not doing something right to control these migraines. I felt ashamed that I couldn't get these under control. Also with plans to do things with family and friends get cancelled it caused hurt feelings I could tell. I'm so grateful that I found this site. I have learned alot from fellow sufferers, and ideas on how to get my migraines under control. What confused me is why doctors sometimes just don't think outside the box. They think migraines should always present themselves the same everything. And I never got in that box. My migraines have changed through the years. But what is always the same is the pain.
thank you for joining the migraine.com community. We are glad you're here. Thank you for sharing a bit of your story with us. You are in a safe, supportive environment here surrounded by others who understand migraine disease and its symptoms. Managing migraine disease is tough and is only compounded by the lack of a good support system. I really wish your family was more of a lifeline for you. Migraines can certainly change over time. Have you seen a headache specialist yet to help you manage your attacks? They are trained to think outside the box when it comes to headache disorders. It may be a good idea to take a family member to your appointments regarding migraine so that they can see and hear what goes on as you talk with your doctor about how this disease impacts your life. Here is a link to help you find a specialist near you if you don't already have one you work with.
https://americanmigrainefoundation.org/find-a-doctor/
Please remember that we are always here for you if you need to vent, have questions, or just need some support. Migraine is tough but we are tougher! Please stay in touch and let us know how you are doing. Warmly, Cheryl migraine.com team
Glad you are sharing openly here. This is a safe space made up of a community of folks who are all navigating similar terrain. You are not at all alone in what you are experiencing! Feeling judged and questioned for not having better control over our migraine frequency is unfortunately a frequent experience for people with migraine. As is having to cancel plans constantly: https://migraine.com/blog/constant-cancellations-the-rare-friend-who-can-navigate. And migraine attacks evolving over time? YES! That is an absolute reality that we hear about (and experience) all the time. How, why, and when they hit... related triggers, symptoms, prodromes, etc- all can shift over time--- this makes our attacks feel like a moving target that feels like a hard math equation - impossible to figure solve. A key part of the puzzle, however, is indeed finding a good partnership with a migraine specialist - and it's worth searching for because it can make all the difference- to feel heard and understood. As to how to increase compassion among the loved ones in our lives, I've tried to address this by sending them links to articles that validate my experiences (many of them from this site) to help them see I'm not the only one living this reality- that I'm in fact one of over 37 million people who face this condition every day. Just because they don't know anyone but me that has it this bad doesn't mean I'm the only one who has it. it's exhausting to try to help people understand what we're up against on TOP of having such intense pain and symptoms so much of the time. I think that's why I like sending articles written by others- so I can share the weight of spreading awareness with other people in the field. Do you think any of this would help? I'm sure you've already tried a lot of approaches! Please know we are here for you and in this with you and so glad you're a part of our community. Please stay in touch! Warmly, Holly (migraine.com team). Yeah I think that's a good idea. I know some would advise me if being a hypochondriac because I'm looking up things in the Internet. I think the most frustrating part is doctors telling me what a migraine should look like and for years I believed them. And that I didn't fit into their one size fits all category. I felt like I had to lie and agree with them just to get help for the pain I was suffering. I wished I would have been more assertive.
Thanks for responding. We are all learning as we go- and growing and evolving along the way. So, as you look back and think through your prior experiencing with telling doctors what they wanted to hear rather than standing your ground - you now know, looking back, that didn't feel right, so you will likely proceed differently in the future. Also, you are not alone in that- I did the same as I'm sure many others did. It's important to give ourselves some grace when we assess our past steps as we all likely did the best we could to navigate the doctor-patient relationship with its skewed power-dynamic. As we get older we come to see that our health and well-being is more important than people-pleasing. It's not too late to become assertive in the ways you outlined.
Similarly, as for others judging you for being a good self-advocate (calling you a hypochondriac for conducting online research on your condition) - that is unfortunate and a reflection of them, not you. We can do our best to help those close to us understand what we're up against, but once we've made that effort, if we don't receive compassion and kindness, we have to assess our energy output. For folks with frequent migraine, energy is finite. Spending it trying to prove ourselves to those who judge us may be a futile effort- when that energy may be better spent on self-care and dealing with all the logistics that come with navigating a complex neurological disease.
Thinking of and with you, Karen. Warmly, Holly (migraine.com team).
Even if you were a hypochondriac, there's nothing to be ashamed of. We all have things we struggle with, and I can definitely relate to the fear of having health problems! Your best bet is to stick with medical sources that are research-based that don't try to hype up the topic or cause fear. I might be biased, but I think this site is a good place to learn and be empowered rather than afraid. Hugs! -Melissa, migraine.com team
Accuse me of being a hypochondriac*
if you've been accused of being a hypochondriac just because you are looking for information on what you are experiencing then I guess you are in good company here lol! We are all looking for information of some sort to help us effectively manage the beast we call migraine. I firmly believe that if we are not arming ourselves with knowledge about this disease it makes our fight for relief so much more difficult. There have been several times I've gone to my husband's doctor visits and we were more knowledgeable about the disease than they were, hence getting with a headache/migraine specialist is so important. If you don't have a doctor on board that understands how migraine disease manifests itself in your life then it is time to find a doctor who does. They need to take you seriously and actively listen to what you tell them so that together you can plot a viable therapy regimen that hopefully helps you manage what you experience during attack cycles. I will admit finding a doctor(s) like that can be a process, but when you find one all the work will be worth it. You deserve the same dignity and respect as any other person. Just because you are living with a disease like migraine does not make you a lesser person. We are always here to support you along your journey. You are not alone. We understand what you are going through. Warmly, Cheryl migraine.com team
