The toll migraines can have on one’s life is often belittled and disregarded. If you’re aware of how debilitating migraines can be, you’d probably know the amount of physical distress one who suffers from migraines might have to go through during a single attack.

Depending on how one perceives pain and the type of migraine one experiences, how each person explains their migraine can vary greatly, but the underlying gist is always agonizing physical pain.

“I liken it to my whole of the inside of my body shaking.”

“I can’t move my hands in front of my face. I can’t handle movement in my view or if I sense it, I feel nauseous in my body. This fatigue that’s more than fatigue. Restless legs at times. Left eye pain. Smells and light or noise are just so painful. I get hot and cold. I can’t find words and I just can’t think well. Ear ringing.”

“It's like my brain is growing and getting heavier and heavier and in the end my head wants to explode!”

However, if we talk about migraine pain in a larger context past physical pain - when you’re forced to miss out on work, social events with friends and family because of migraines, feelings of frustration, fear and guilt add to the complications of migraine pain.

Based on a focus group study discussing about the ‘Perceptions and Needs of Patients with Migraine’, participants of the study “did not differentiate emotional distress from the physical disability caused by migraines”, and they were “inclined to emphasise pain and disability but minimised emotional reactions in an effort to legitimise frequent migraines as a serious medical problem.” This could be due to how migraineurs are commonly perceived in society, and the social stigma that they battle every day.

Social Stigma of Migraine

In an interview done by Everyday Health, Dr. Branca explains the social stigma and how the world views migraines. “It is shaped by ignorance, both on the part of people not in the medical profession at all, so there are a number of people who don't understand that migraine is a brain disorder.”

She further adds on that addressing the invisibility of migraine as an illness, saying

“You can't prove pain. The (society) see(s) the migraine sufferer as a lazy person.”

The social stigma of migraine undoubtedly weighs in too, on top of that self felt guilt, anger and frustration.

Migraine Guilt

Guilt, is a “feeling of remorse” or “sense of responsibility” from doing something we deem wrong or an offence. It is also further defined where the wrong mentioned could be real or imagined.

It’s natural to feel depressed, anger, low self-esteem and shame when you want things to work out like the way it used to before you had migraines but nothing seems to feel or go right anymore because of it.

Because of a migraines, I _____ and I feel guilty.

The essence behind migraine guilt is exactly that, because of migraines you end up: missing your kid’s play, cancelling on plans with friends, thinking you ruined a family trip, asking your coworker or friend to cover for you at work/school, the list is endless.

Other early feelings of guilt could form when doctors and medical experts can’t initially find the reason behind what’s causing it and we thus put the blame on ourselves, thinking we’re the cause behind it.

Of course, migraine guilt isn’t something that is only felt by the person suffering from migraines. It could be felt by close friends and loved ones who feel guilty for not being able to “fix” us or physically share the burden when we’re facing an attack.

If we were to categorise where migraine guilt falls, not many people may realise, but a large majority of migraineurs probably feel guilty for an imagined offence. Countless research has been done but the true cause behind it is still not yet known. Furthermore, no one ever asked to have migraines or for it to take a toll on our daily lives.

Coping with and letting go of the guilt

As mentioned, guilt can come from countless sources and when left unattended, can lead to even more serious issues such as depression, which could further damage work and family relationships. So how can we cope with migraine guilt and learn to slowly let go of it?

1. Take your life into your own hands

Getting a proper diagnosis could be a good start, not only for your physical health but emotional health. If you realise the doctor you are seeing now doesn’t take your pain seriously, ask for a referral to consult a neurologist with specialised knowledge in migraine.

Bringing your loved ones along with you during your consultations can not only help you have smoother sessions because they could validate the impact of migraines on your life, but they would also learn how to better help you. This could eliminate/lessen the feelings of guilt of your loved ones, especially if they feel helpless seeing you suffer during an attack.

Taking the time to read up and learn about the causes, symptoms, possible treatments and side effects of migraines is important. The more effort you put into learning about migraine, the easier you’ll understand how to cope and the more you’ll feel like you’re in control of your life again.

2. Join a community. Remember you’re not alone

If you ever feel alone, remember that there are literally millions of people in the world who understand the guilt you face. According to the Migraine Research Foundation, migraine affects 39 million men, women and children in the U.S and over 1 billion people worldwide.

Another quick and easy way to get the support and knowledge you need is by joining one of the countless online communities or support groups for migraine. More often than not, it helps to talk. Tips are regularly shared within these communities, and it’s just a warm safe place for anyone who just wants to share or feel comforted. When you’ve found a way to cope, it’ll be your turn to give back and help others!

The Migraine Buddy community welcomes you with open arms any day, we’re always here to listen, share and learn with you. You can join the Migraine Buddy community today here!

3. Practice Self-Compassion

Why should we feel guilty for something that’s out of our control? We know we’ve done nothing wrong but we can’t help it. That’s just how our mind works sometimes. However, we can learn to be a little more forgiving to ourselves.

We really like this paragraph from 'The Migraine Mantras'.

“Sometimes I cry, I curse myself, and I self-isolate. And I’ve finally realized that it’s completely okay to let myself experience those emotions instead of drowning in them. Ultimately, I try to make the best out of what I have in the moment, to practice gratitude for the beautiful, positive, encouraging things life hands to me.”

We all hate breaking promises and letting people down and self-blame is definitely much easier than self-forgiveness. Self compassion starts with accepting yourself as you are, without resentment or self-hate. It’s impossible and unhealthy to just suppress or deny the guilt and of course wallowing in self pity won’t help either.

Instead, it’s about learning to be gentle and forgiving yourself for the things that are out of your control. Realise that sometimes you just have to do what’s best for yourself, you don’t have to please everyone. Explain to them what you’re going through and if they care enough they’ll take the time to listen and understand. If you feel that it’s too overwhelming, take things slowly and one day at a time.

4. Educate, don’t hate

Yes, the insensitive and snide comments really don’t help, and it can get frustrating when people don’t get what you’re going through. However, most of the time it’s because they don’t even know what migraine is. Play your part in erasing the stigma of migraine by educating the people around you, be your own advocate.

Remember, just because migraines are so debilitating, by no means are you in any way inferior to anyone. In fact, as a migraine warrior, you’re probably the strongest of them all for constantly overcoming something you have no control over. Take baby steps to develop a healthier and more forgiving attitude to yourself. It’s just a bad day, not a bad life.

Do you struggle with migraine guilt? How do you manage it?