Migraine in all of it’s varying forms is a misunderstood illness and it is accompanied by many stigmas. The fact that people with Chronic Migraine have 15 or more migraine days per month is only compounded when loved ones do not try to understand. Fighting a Stigma of any illness is difficult but when the illness completely isolates you, it can be even worse.
Before I can talk about fighting a stigma, I need to talk about what some of the stigmas are.
It is just a headache-
Nothing could be further from the truth. A migraine brings nausea, vomiting, debilitating pain and visual disturbances (see Migraine Explained: What is an Aura?). In some form of migraine, it can also cause partial paralysis (see Chronic Hemiplegic Migraine Defined), verbal disruption (see Transient Aphasia: When Words won’t Come) and heightened sensitivity (see The Truth about Phantom Smells and Migraine Explained: Allodynia).
Only people with high levels of stress get Migraines-
This is a very common misconception about migraine. While stress can trigger a migraine, it is not the cause of migraine. According to Migraine.com, “While a patient may remain attack-free throughout a stressful event, the attacks begin once the stress is eliminated.” In fact, not every person that gets migraine is triggered by stress.
Just take a Tylenol and move on with your day-
I have actually been told this one before by an employer and I was devastated. While over the counter drugs might work on occasion to minimize the pain slightly, it does nothing to help with the other debilitating symptoms. So over the counter medications are not adequate treatments for migraine. It is difficult to move on with your day if moving makes you so physically ill that you need to lay as still as possible.
Fighting a Stigma
Now that I have expanded on a few of the main stigmas, let’s talk about how to fight the stigmas of Migraine. It will not be easy and it will not always be effective but you will educate a few. Doing this, is important to fighting a stigma on a bigger scale.
Correct someone if they say something that is incorrect-
This is hard for most people to do because the majority of people do not like confrontation. I find that this is the most effective method of fighting a stigma. If someone is willing to listen, it can really change how someone perceives your struggles. There are people in my life that are great supporters now that used to minimize my illness before I had a truthful conversation with them.
Do your research and be ready to share it with your employers-
The effectiveness of this one depends on the attitude of the employer. If you have a boss that is understanding most of the time, doing this may add them to your support system. Bosses don’t typically just want a conversation but if you approach them with website that lead to actual research information, it might help. A few sites to find information are, American Migraine Foundation, National Institute of Neurological Disorders and Stroke and National Headache Foundation.
Have a plan-
I am finding that having a plan of what to say to others has worked really well. For one, I don’t appear to be flustered about what to say. This makes me come across with information that I am confident about. That confidence can completely change how people accept what you are saying.
Take care of yourself-
This one might seem easy but it really isn’t always. It will require you to ignore the statements made behind your back and focus on you. Once you have tried to communicate and educate, you have done all you can. You cannot force someone to accept your explanations. All you can do is to try to educate but at the end of the day, your health is what is most important.
Don’t isolate yourself-
This one is the hardest to achieve because the expectation is that if you are sick you can’t do things. Isolation is a side effect of migraine, especially Chronic Migraine. The treatment of laying in a dark, quiet room doesn’t exactly make you the most fun friend to have. But on your good days, call up your friends and make yourself available for some fun. Do not wait for them to call you. This is one that I am currently working on and I am finding it difficult. It is easier to sit in isolation and feel like no one cares anymore. I am missing out on a lot because I am not reaching out on my good days.
Although the stigmas I listed and the ways to fight stigmas only scratch the surface, I hope that this gets you started. As you try different strategies for fighting the stigma that you face, you will find what works best for you. It is important to fight these because in doing so, it makes our journey easier, our support system stronger and our frustrations lighter.