How do you stay positive when you are living with migraine, when each day is such an uphill battle? How do you keep putting one foot in front of the other when all you want to do is crawl into bed and hide from the lights, smells, and sounds of the world?
How do you live in a world that keeps going without you? Family and friends move on, live their lives and you are left to watch them as they go by. It’s like you’re sitting by yourself, trapped in a tiny, dark room, watching them through the window. But the window doesn’t open, and the door is locked from the outside.
And the pain. The pain fills your head, then your heart when you realize you have to cancel plans yet again, break promises to your children – again, retreat from your family and friends – and crack that human connection just a little bit more.
I am pregnant with my second child and, honestly, I feel guilty about bringing another baby into the world. I can barely take care of myself and my son while my husband is at work. I can’t do normal life things. I can’t do mommy things.
I lost my job because I just can’t function when my head feels like it is splitting.
Sometimes I feel like I’ve accepted the migraine life.
Other times I feel like I can’t do this anymore. I don’t want to do it anymore.
In the past three years I’ve seen so many doctors, tried so many medications and treatments, talked to so many therapists.
But we are struggling financially, especially with the baby on the way, and can’t afford much on therapy or doctors or treatment anymore.
I can’t even hire a babysitter for the really bad days. My family doesn’t understand at all and really aren’t much help. I have a few friends, very few. But they all have their own lives – and problems.
I feel so isolated, so alone.
How do you keep going? How do you do it? How do you press on when you’re at your wits end?
Living with Chronic Migraine
Every day people living with chronic migraine struggle with not just doing the regular daily tasks like going to work, taking care of the kids, doing laundry, and visiting with friends – they struggle with having a life at all.
Browse a migraine forum and you’ll see post after post of people who feel that their quality of life has been stripped from them. They feel isolated, separated from family and friends, misunderstood, and alone. It’s no wonder that anxiety and depression are so closely associated with migraine.
And it’s no wonder that more than 20% of people who have migraine have considered suicide.
The chronic pain is only one part of this devastating condition.
We talked with Salina Shelton, licensed professional counselor as well as founder and clinical director of the Chronic Pain Resource Center of South Texas to get some advice on how people who are living with chronic migraine can reconnect with their world.
Migraine Isolation is a Thing
There is a certain stigma attached to migraine. Yes, even with all the research, all the medical advances, all the studies that examine the condition in depth, there is still a stigma.
The person with migraine is often accused of exaggerating their symptoms or even of fabricating them completely. They are told to “take an aspirin and get over it” or other similar advice.
Eventually, after too many canceled plans and too much inaccessibility due to migraine attacks, the person experiences increasing social isolation – migraine isolation.
Living with migraine means never being able to fully relax. It means never letting your guard down lest you have an attack. For many people it also means never going too far from home because the fear of an attack keeps them bound to that one placed where they can usually, hopefully, hide away until it’s all over..
Many migraineurs say they feel trapped or feel like a prisoner because of their migraines. They don’t make plans and avoid social functions because they don’t know when an attack will strike. Their quality of life that they crave (and deserve) decreases with each missed connection, each canceled plan and they watch the infrastructure of their world, the human connections, slip further and further away.
According to Salina Shelton, this is a common problem that comes with migraine. “I work with so many people who identify similar feelings. Combatting isolation, a big factor in feeling trapped, is an important part of improving quality of life.”
Humans are social creatures and we thrive on at least some degree of contact with other humans. Some need more contact than others, but on some level there is always a need for connection with people.
Brené Brown, Professor of social work at the University of Houston says, “Connection is the energy that exists between people when they feel seen, heard and valued; when they can give and receive without judgment; and when they derive sustenance and strength from the relationship.”
“One way to counter isolation is to pay it forward,” says Shelton. “Providing care and kindness to others, though we are suffering ourselves, can be a small step toward building social connectivity.”
Migraine robs many people of those connections, but it is possible to take it back.
There are things you can do in your own home to reach out to others. Check out some of these ways of giving back:
Learning to Cope When You’re Living with Migraine
You cannot plan around a migraine attack. Migraine does not respect schedules or family plans or special occasions. It comes when it comes and does it like a freight train.
So, how can you preserve your quality of life with a condition that is so unpredictable?
What are some ways that you can cope with the daily or frequent pain of migraine?
“I cannot stress enough the importance of self-care and pacing,” says Shelton. “Self-care is more than taking a bubble bath. It includes doing nice things for your future self, like folding and putting away laundry when you are tired. Future you, who may not be feeling as well will be so grateful!”
Pacing yourself is an important part of self-care. All too often people with chronic pain will push and push to get everything done because they don’t know when they will be down again.
Shelton says you should avoid doing this, be kind to yourself, and stop when you need to stop.
“So often we tell ourselves, ‘I will take a break after I finish this chore (doing dishes, folding laundry, etc.),’” she says. “If you are starting to hurt, you have already worked too long. Do chores, especially ones that are known migraine triggers, in short increments like 5 or 10 minutes. It may take significantly longer, but you will finish the chore without a migraine and may be able to continue on your day, whereas before, the chore would wipe you out for the day.”
In other words, love yourself to take care of yourself.
Therapy Can Help Improve Migraine Quality of Life
Migraine is a big, all-encompassing condition that can take over your life – and it does for many people.
Because it tends to be so severe, most people focus on the pain and other debilitating symptoms. The emotional side, the side that thrives on human connection is often pushed to the backburner where it is forgotten and wastes away until the person realizes one day just how very lonely, they are. They may feel angry and may even resent family and friends who don’t have migraine and are not able to understand what a migraineur goes through every day. They can’t understand that while the attacks are bad, anticipating or fearing an attack can be just as bad. It can rob you of your quality of life, your family, your friends.
According to Shelton, chronic pain therapy can help.
“Therapy is such a big part of self-care,” she says. “When we suffer from chronic illness, we need our experience to be seen, accepted without judgement, and to experience feeling valued as a person. Most people in our day to day life who do not experience chronic pain cannot realistically offer these things. It is not their fault; they have no frame of reference. When we experience validation, we can then begin the process of healing. By that I don’t mean being ‘cured,’ I mean we can begin to look for moments of joy, laughter, and gratitude.”
Therapy can also help you manage any anxiety and depression that may arise. It is not uncommon for someone with chronic pain to experience these things. Therapy can help you keep ahead of it and manage it when it gets bad.
You can ask your doctor to recommend a counselor or refer you to one. You can also check this list to find a therapist for chronic pain in your area.
Shelton continues, “One of the biggest obstacles people with chronic pain face is a lack of or limited resources. This only makes matters worse. I would encourage this person to look for a free support group or online support group. Please be careful with online groups too. Positive support is critical. One place to start is Pain Connection. They have a phone support group.”
Resources for Hope and Help when You are Living with Migraine
Connecting with others is important when you are living with migraine. It can help stave off depression and give you a better quality of life.
Sometimes family and friends don’t understand because they don’t have migraine. They are not able to understand the pain or anxiety that comes from never knowing when you will have another attack.
You may be able to talk to them, explain your condition and how it affects your life. You can tell them that plans may have to be cancelled from time to time – sometimes at the last minute.
If they are sympathetic, be specific and let them know what they can do to help you. They may be able or willing to help you when you have an attack.
Of course, some people will never come around though. And you have to prepare for that. While the prospect of going through it alone is not appealing, you may be better off by yourself as opposed to being with someone who doesn’t understand and is impatient with you.
There are a number of online migraine support groups that you can join to get support and advice from people who are just like you. Take care to choose wisely, some groups are not well monitored and that can lead to bullying and abuse on the forum – neither of which is productive or healthy. These are a few of our favorite groups for migraine support:
- Daily Strength: Migraine Headaches Support Group
- Facebook: Chronic Migraine Support Group
- Facebook: Migraine Strong
Salina Shelton has some recommendations of her own, “I have begun doing EMDR treatments with my clients who experience chronic pain and migraines. Many of my clients have had great results. I also highly recommend the site Neuroplastix. It provides information about neuroplasticity and how the brain can heal itself.”
You deserve your best life with migraine and that doesn’t have to leave you isolated and disconnected. Therapy, support, and paying it forward are some of the best ways that you can thrive while living with migraine.
Your family longs for it. You deserve it.
If you can’t afford your migraine medication or don’t have insurance to see a doctor, this list of resources may help you find the help you need. We also have information on Medicare for migraine. If you are interested in our migraine glasses, we have discounts for veterans, a discount code for signing up for our newsletter, and some insurance companies will reimburse you for your purchase.
The bottom line is, you must take care of yourself. Your health is important, physically and mentally. You deserve a life, your best life, even when you are living with migraine.
Feel free to comment with your thoughts below.