The Ugly Side to Chronic Illness Support Groups

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What happens when support groups are not supportive? Chronic illness groups, migraine and vestibular disorder groups are all very unique, but they don't always provide the help you need. #migraine #support #vestibularmigraine

As I was scrolling through Facebook the other day, I noticed in one of my vestibular support groups that someone had posted a picture of the foods that weren’t allowed on the Heal Your Headache diet. This woman was just starting the diet and was looking for recipes since she was struggling with the limitations. Eagerly I went to go comment about this site, but my excitement abruptly fell flat once I started reading the comments. There was only one or two people who commented anything positive and the rest were tearing the list apart.

Some of the comments were:

  • “So basically lettuce, and water, oh wait..lettuce keeps getting recalled…so water”. Then someone else joked that she could add ice for something crunchy.
  • “What are you supposed to drink when you wake up at 6am?”
  • “May as well say all foods cause migraines.”
  • “I would starve.”
  • “Seems like we’re not allowed to drink or eat. This diet is for people who are well off.”
  • “Gosh, why not just starve.”

First of all, to the people who are saying that you would just starve…are you nuts?! Did you not see the loaded sweet potato fries, chicken wings, cake, and tacos I’ve posted on instagram just in the last week? Here’s a list of all the things you can eat, and this doesn’t even include everything. But these people will most likely never look at this list and attempt a migraine diet. And do you know a big reason why? 

Because a lot of people want the magic pill.

The one question I consistently get asked – “What’s the one thing I need to do to get rid of this illness?”. Unfortunately the answer is not that simple. Vestibular migraine, or any migraine, is a neurological disorder. It’s not a cold or an upset stomach where you can just go down to the Walgreens and pick up some Pepto. It takes time, patience, trial and error, and perseverance to heal. It’s a fight every single day to get your life back. For those that do have vestibular migraine, our healing process can often be complicated by other factors – vestibular damage or Meniere’s disease crossover are two examples. There are many things you need to try, not just one thing. I get it. It’s the most frustrating thing in the world to be told this won’t be gone by next week.

You know what the fastest way to healing is? Trying literally everything that might work – from diet to supplements, new medications, therapy, mindfulness, exercise and VRT.

The fact that people were speaking negatively about a diet that made a huge difference for me was not the reason I became frustrated enough to write this post. There are many diets out there for migraine and while I believe some are better than others, different things work for different people. Heal Your Headache is not the answer for everyone, nor is it the magical cure. My issue is that this group is labeled as a “support group” yet there is very little support going on for this woman who decided to try something new for her treatment (good for her!), and was finding it challenging. 

As someone who was lonely and depressed for months after being diagnosed, I found hope in seeking out any treatment I could find. It’s particularly hard to find natural treatments that work for a wide range of people. If I would have asked this same question to my migraine support group and only received these responses, I probably wouldn’t have touched the diet with a 10 foot pole. And if I hadn’t, I might still be miserable on the couch, stuck in depression and feeling worthless.

How far are you willing to go to get better?

Let’s talk a little bit about excuses. I used to be the queen of excuses. Chocolate makes me feel better when I have a bad day. I need coffee to wake up in the morning. I feel like garbage so I need to order Chinese takeout tonight. Now there are all these leftovers of Chinese takeout that I must eat so I don’t spend more money. This organic food costs a ton and I just lost my job. I live in Texas – I can’t live without guacamole and margaritas! There’s a million of them I could come up with. But here I was, not well enough to work, barely well enough to walk. I could either give up and continue with the path I was going down, or try to change something. It got to the point where I would have probably sawed my arm off if you told me it would make me feel better. So a diet really didn’t seem that bad.

After a few weeks without coffee, I actually found that I had more energy than before. I felt better, my head was clearer, and I didn’t have as many dizzy episodes. There are some fantastic alternatives to have more energy like a workout, B vitamins, and magnesium malate or threonate. (For more info on supplements, check this page out).  

This advice pertains to more than just the diet. Maybe it’s a medication you’re fearful to try. Or a workout you’re afraid might trigger more symptoms. But doing the same thing over and over again while expecting different results is the definition of insanity. And I see a lot of insanity in support groups.

The ugliest side

Normally if I don’t agree with someone, I just scroll on by. But these folks went out of their way to put down and even joke about someone else’s treatment plan. What’s the motive behind it? It clearly wasn’t helpful. Sometimes I wonder if misery loves company and if people want others to feel the same way that they do.

Another thought is that maybe a select few just don’t want to get better. Perhaps if you’re on disability or if your instagram platform is to be sick so people can relate and follow you, it would make it difficult to strive to get better. Maybe you feel like everyone might think you made it all up if you started feeling normal again. I know this sounds truly crazy, but I see people who have the best advice given to them and they choose to ignore it. They post multiple repetitive posts in different groups. Just 5 or 6 months later, they’re back to posting the same thing.

Support needs to be more than just “Oh I’m so sorry. I hope you feel better”. Sorry doesn’t cut it in the end. It’s like sprinkles on a crap sundae. People need tough love and they need tried and true methods (or at least as tried and true as we can get with a diagnosis that’s not well-researched). If you see someone that’s genuinely going down the wrong path, then you can say something and perhaps attach the research as to why it’s the wrong path. But don’t tear down someone for trying something new, even if it didn’t work for you.

Heal them with kindness

I devote much of my time to The Dizzy Cook, which isn’t just about a diet, but also provides resources for vestibular migraine. I make very little commission from my amazon links, and since I don’t have ads I’m not bringing in a lot of money. In fact, I spend more on making this site be the best it can be. I also don’t do this because I’m still sick and can’t work, I do it to help other people. The majority of my days I feel really good, 100% even. I stay in these groups to help other people get to the place I am in.

I would not say that I’m in remission because I do have a dizziness spike here and there if my triggers get to be too much, but it’s either easy for me to resolve with some abortive medication or a good night’s sleep. Remission for me would mean 100% all the time for at least 6 months. It’s something I still strive for, always researching new treatments.

I got to 100% days because I found a fantastic neurologist, I took all the supplements recommended, I tested medications that others might say haven’t been proven, I stuck with the  migraine diet, and I found other natural treatments that work for me, like acupressure and reflexology. I’m also lucky because some people don’t find their perfect combination as quickly as I did. But I’m passionate about letting others know that they don’t need to be stuck in a dark place of depression with their vestibular disorder. There are options out there, and it would take over 20 years to have tried everything with no success. Plus new research is happening everyday. 

Instead of killing with kindness, I like the phrase “let’s heal each other with kindness”. Don’t be the reason that others hate support groups because they’re sad and depressing or filled with inaccurate information and scary stories about medications or diets that could potentially help someone. Be the change you want to see in your support group. Even if you don’t agree with someone’s diet or medication choice, encourage them in their journey because they are most likely really freaked out about trying it.

*In other news, the Migraine World Summit announced the official dates today – the conference will take place March 20th-28th this year. Visit their website to claim your free ticket. More information to come!

 

Alicia was diagnosed with Chronic Vestibular Migraine in 2016 and has been able to successfully manage her symptoms through medication, supplements, lifestyle changes, and the Heal Your Headache Diet by Dr. David Buchholz from Johns Hopkins. She's the owner of The Dizzy Cook.

20 comments

  1. Mandy

    Thank you for all your hard work! You and your hard work has helped me a ton in the past year! I wish more people were like you and the Migraine Strong group. It has been a life saver.

    Reply

    1. Alicia

      Thanks for your sweet comment, Mandy. That makes my day!

      Reply

      1. vilma nuzio

        Hi Alicia. It’s been about a month since I connected with your blog. I jumped right in with following the suggestions for the Vestibular Migraine diet. I felt significantly better, but not completely better. After a two weeks I started to reintroduce some foods. Within a few days I started to feel crummy. Well I learned my lesson and went back to the diet. I also realized that the gluten free bread was definitely a trigger. I have spent a good part of this day on this site and trying to get better acquainted with the “do’s and don’ts for this journey. I recognize that this is a journey of ups and downs. The good news is that I am not as sick as I was before coming upon this blog. So…..I am back to educating myself and am bound and determined to get it right. Thank you so much for your dedication to helping this community of people dealing with this issue.
        One thing I have discovered on this journey is that my posture contributes to some of the dizziness. The Oxymital (not sure of spelling) nerve on lower part of back of skull, when pressed, relieves some of the migraine pain. Learned this from physical therapy and it certainly has been helpful for me.
        Thank you again for your.
        Vilma

        Reply

        1. Alicia

          Hi Vilma,
          I had the same experience as you. Tried to reintroduce foods way too soon and realized it was actually helping a little bit even though I wasn’t seeing drastic changes. Glad you decided to hop back on and stick with it. At about 5 or 6 months of sticking with it I was definitely seeing a bigger change that made it worth it.

          That’s awesome. Actually my massage therapist uses some of these acupressure points when we have our appointments. I find them incredibly helpful too!

          Reply

  2. Nancy Panyon Fick

    Beautiful article. I can’t imagine where I would be at right now if I had not found your site and Migraine Strong. I feel what you described. When I created a Facebook account to join your recipe chat and Migraine Strong I also joined two other migraine groups. I was barely in them for a week before I backed out of both. I experienced exactly what you described and thought “this is not helpful”. In fact it made me more depressed about my diagnosis. I’m going with sometimes less is more.

    Reply

    1. Alicia

      Nancy, I’m so glad you found us too and that you tried Migraine Strong. I remember you being hesitant about it being on FB! That’s such a great observation that sometimes less is more. It’s like once you find a group you feel comfortable in and trust, that’s all you really need. Often we want to know everything about our illness from everyone, but it’s not always helpful or accurate. And sometimes I find in other groups when I correct the information given or post a helpful link, no one pays attention. They want to focus on that one person whose mother’s aunt’s best friend cured their migraine with a banana!

      Reply

  3. Amy McNally

    Thank you for this post, Alicia. I think it’s easy for all of us to fall into a negative rut. I am so grateful for your help and suggestions. My family even knows all about “The Dizzy Cook.” You teach us by example how to help ourselves and others. Thanks for these important reminders. Best.

    Reply

    1. Alicia

      Amy, that’s so wonderful! Haha! I love that they know the name. I really appreciate your support too. I swear the people who read this site are seriously the best. They’re the ones who really want to help themselves and want to support others to do so as well. Thanks for being a part of this community!

      Reply

  4. Lorraine Olson

    Hi Alicia, Thank you for your article. I am 63. My migraines went away with menopause and I was so happy! They have returned with Meniere’s Disease and they are worse than ever. The vertigo was unbearable and now I am slowly recovering thanks to diet, supplements and drug therapies. I have tried some of your recipes and they are very tasty! Now about support groups. I avoid them entirely because of what you have found. Here is a quote from your article that particularly applies: “Sometimes I wonder if misery loves company and if people want others to feel the same way that they do.” I learned that this is true many years ago and started avoiding people I knew who just wanted to drag me down with them. That was face to face, though, and it’s harder to avoid online. So I just haven’t joined any support groups! Anyway, I think you’re doing great work and I’m glad to follow your blog and website. Thank you!

    Reply

    1. Alicia

      Hi Lorraine, Thank you so much for your comment! I’m so sorry to hear they have returned. I have been doing a lot of research about VM for the book and there’s such a strong crossover with VM and Meniere’s Disease . I thought this study was really interesting : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5019886/ I’m happy to hear that you are on the path to recovery once more. I will say that on the positive side, I’ve met a lot of great friends in the support groups I do like so they’re not ALL bad. 🙂 I too had to re-evaluate my friends though. It’s funny who is there for you when you go through these things and who abandons you. I hope you find the support you need here!

      Reply

    2. Lisa Leib

      Lorraine,

      Your story interested me because my migraines disappeared with menapause and then reappeared as vert. migraine (different than the old migraines) and some other kind of vertigo that no one has been able to diagnose. I have been on disability since September and would really like to return to work!
      I look forward to the suggestions from this group, like the food selections, and would love to also hear how everyone manages going back to work. I fear that I will go back and then I will have to keep missing time and it will be disruptive. I love my job and my team is amazing! Having never had a chronic disease before this is all so new!
      Thank you for everyone’s support!

      Reply

  5. Gemma from Kent, UK

    A very valuable post here! My amazing consultant warned me about these “support” groups as during my first appointment, I mentioned some of the things I read. For health reasons, I am not able to take any medication (only supplements), and being on the diet had been my amazing cure! Sure, I miss a cup of tea in the morning, and a handful of chocolates in the afternoon. But I also enjoy being able to jog again, not having tremors and being able to work and drive!! Oh, and be able to play with my kids!!! It’s a very easy trade off! The HHH book set me on a good path and whilst I don’t follow it 100%, it’s given me lots of options and strategies for managing my symptoms (which feel like they are getting less everyday!!)

    Reply

    1. Alicia

      Gemma, what a great post! I’m so happy the diet was the missing piece for you and that you found it. Now that I’m feeling better, I find I can get away with a little more too. 🙂

      Reply

  6. Erica

    Thank you for your wise words on this, Alicia! As a newly diagnosed vestibular migraine WARRIOR(!!!!) I am beginning to reel in what’s helpful and what’s not as I lean into this condition, letting it live beside me while I live my life! (That sentence should read: “as I learn to deal with this god-awful damn thing that I can’t even believe exists, let it live beside me while I live my freaking life and not let it own me or bring me down!”) 😉 The misery loves company in the support groups is so hard to witness and easy to get sucked into, and as I spent more and more time in them I realized something really important: it’s not the whole group. So even if you ask a question to the whole group, the only people who respond are the people who relate, or just read your post that day, or feel like responding, etc. I tend to think that the majority of people who heal leave the groups or don’t even check in with the groups anymore because they have a beautiful life to live! I see now that my healing journey is just that–mine. No one thing works for everyone and all of us are different. So good on you for staying in the groups and chiming in and offering real, tangible help in the form of food support, and sticking up for what works for you. That you have 100% days is a strong testament to how HYH + supplements + exercise + all the elements that work for YOU really absolutely does work!!! That is awesome and I am so happy to have found your positivity on my journey with this!

    Reply

    1. Alicia

      Erica, I love that “WARRIOR!” – yes, you definitely are!! I 100% agree, with you. It’s definitely not the whole group and it’s very easy to see the positive parts if you’re looking for them. That’s a big reason why I try to stay fairly active in these groups – I don’t just want to leave it because I feel better. I want the world to know it’s possible for them too! Maybe not necessarily following my path, but whatever path works for them. And for even making an effort to go down a path! Plus you can learn so much from others too. I absolutely can’t wait to read YOUR success story in the future!

      Reply

  7. Emily

    Really appreciated this post!! When I first developed chronic migraine almost a year ago, I joined all the Facebook groups and followed a lot of migraine people on Instagram. While some are definitely sweet and helpful, others do just remind me how bad this condition can get, and how depressing it feels not to have answers. I understand why people write those sorts of posts, and in a way yes it’s comforting to know you aren’t alone, but gosh sometimes you just want positivity and action! I have tried the Migraine Miracle diet (paleo, Keto if you have chronic migraine) and it resulted in a very bad time for me. But I tried! One week into this now, and it makes sense for me and my triggers, so I’m super hopeful so far. I’ve also upped my exercise levels, started acupuncture, added a couple of extra supplements and ditched alcohol completely for a while. I’m positive that these changes will result in a lower monthly migraine count for me, and that gives me the strength to stick to it and make it fun. What’s not to love about honey ginger chicken followed by vanilla ice cream?! YUM! Thanks for taking your time to write this blog 🙂

    Reply

    1. Alicia

      I agree! It’s tough because I do notice the posts and groups that are like that have a lot of engagement and likes. I know it’s popular to be that way, but I also know it didn’t help me. I’m sorry to hear about the MM diet. I know some of my friends who do keto have a lot of luck doing HYH first to discover triggers and then perhaps combining that with keto if they don’t get great results with HYH alone. So even MORE options for you. 🙂 Hope you see some changes soon from all the hard work you’re putting in. You have a lot of support here if you ever feel discouraged!

      Reply

  8. Brandy

    Thank you for all your hard work and all you do for migraine sufferers. Your diet plan has helped me so much and I agree 100% that treatment is trial and error. There are some things that are triggers for others that are not for me. I to get nervous when posting in some groups cause I have experienced people attacking me saying that’s not hyh approved but certain foods dont bother me like they do others.

    I think its important what you do and the support you give ALL migraine sufferers is such a blessing. Keep up the good work because you are helping so many people be happier and healthier better versions of them

    Reply

    1. Alicia

      Thanks so much, Brandy. 🙂

      Reply

  9. Jill

    I just love your positivity Alicia!! First time I’ve read your article above, it’s so helpful. Positivity, sharing and supporting each other is the very best we can all do. I am so glad I happened upon your website early on when I was diagnosed six months ago, and feeling very confused. Many, many thanks for heading me in the right direction and for your wonderful recipes.. it’s really no hardship to avoid tyramine and histamine with your fab blog.. it’s quite a creative process in fact!!
    Can’t wait to get my hands on your recipe book!
    Kind regards, jill x

    Reply

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