The Ugly Side to Chronic Illness Support Groups

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 foods allowed on a migraine diet, 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 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.

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. Yet I still get hateful messages all the time, most often about small inconveniences that help me pay the costs of providing free resources. People complain about ads, not realizing the costs of running a website like this can be well over $1,000 a month, not even counting groceries. People think you write a book to be famous and make a lot of money, not even realizing you make around $2 from it on amazon. My book income for this last year was probably equal to the amount spent on groceries for it, not even accounting for time, effort, and babysitting to be able to work on this.

People send you paragraphs of messages, taking advantage of free advice and time, only to never say thank you when you spend 30 minutes of your day writing them back. Some days, it wears you out. Especially when your intentions are questioned after you give so much of yourself.

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, but it gets really hard to continue some days. Why would people who get better stick around to help, only to be torn down?

I got to 100% days because I found a fantastic neurologist, I took all the supplements recommended, I tested medications and treatments 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.