On a Deserted Island with Migraine?

Written by Kelly Amspacher and Lizzie Propati | August 24, 2023

“How can I feel lonely? I have my family around me and it’s my birthday weekend. Our daughter is visiting, who I haven’t seen in a while, and she’s spending 4 days with us–I’m over the moon excited! I have a migraine action plan that my headache specialist and I developed which, hopefully, will keep my intractable chronic daily migraine and vestibular migraine attacks at bay.

I was cruising along until Saturday night. That’s when my migraine began invading my treasured family time. By Sunday, I was aching to be on the couch, taking abortives, ice hat on, and trying to rest. As my sunshine, my daughter, sat at the other end of the couch, just like she did as a child, I began thinking, ‘Why do I feel all alone?’ I came to the conclusion that even though I was surrounded by love and support, no one understood the sense of loss. That sense of loss amplified as the minutes of my daughter’s visit began slipping away. When it was time for her to leave, the hug we shared was like no other. The amount of love, positive energy and comfort was astounding.”  – Kelly Amspacher

Migraine, Loneliness, and Isolation

Woman with dark hair wearing a white tshirt and gray sweatpants sitting on the floor at the foot of a bed with her arms wrapped around her knees feeling lonelyKelly’s experience above led both of us to think.  “What has migraine taught us about loneliness and isolation?” Migraine, especially chronic and high frequency episodic, lends itself to a life of isolation and loneliness. We both remember feeling almost gleeful that people were exposed to “our social world” when the pandemic hit. People didn’t know how to behave or interact without being in-person. For us though, this was a life we knew all too well and for too long!

People who live with migraine learn to make the most of our social situations. We’re great at being flexible and creative when it comes to socializing. It takes a huge amount of energy, but we know that reaching out for support is essential, whether it be professional and/or a support group. Sharing similar life experiences does wonders for the mind and body. Talking to people who ‘get it’ makes a world of difference. You truly know that you are not alone and somehow you feel more ‘normal.’

Tips to Help During Dark Times

However, sometimes we can’t get to our therapist or our ‘people’ when we need to. Feeling that sense of isolation and loneliness is really tough when living with a chronic disease. At times it can even feel like it is too much to manage. While we are not therapists or doctors, we CAN share a few things that help US during those dark times. Hopefully they will help you too!

TIP #1 – Remember to Breathe: It may sound ironic, but BREATHE!!! Sometimes the pain and anxiety are so bad we don’t even realize we are holding our breath. If we can connect to our body and mind we can help to un-tense ourselves. It may even help us to better manage the pain and other symptoms. This is the time when it is important to breathe! Take a deep breath in, let your diaphragm expand with the breath, and then let it out. Repeat this for 3-4 times and you will feel your heart rate decrease. If you find that your shoulders are going up when you breathe in, try putting a hand on your stomach. It should be moving out as you inhale, and back in as you exhale.

TIP #2 – Consider Meditation: Meditation can be a godsend, and there are many types that you can try. To help you explore this there are many apps, books, and even online options. One type of meditation uses guided imagery. Essentially, you put in your mind a place that makes you happy, and then you hold onto a picture of that place. Sometimes we can get so comfortable with the imagery that we can almost see the most vivid colors, smell the area, and even get a sense of temperature on our skin. You can also try a favorite picture. Look at it and envision yourself there! The people, the time of year, the temperature, what you are wearing, and how it makes you feel! Happy & peaceful are the desired results.

TIP #3 – Try Doing a Body Scan: A body scan is a form of guided meditation that you can do anywhere. In fact, this is something that we often do during our Chat & Snack (find upcoming Chat & Snack events here)! In a body scan you bring attention to your different body parts, and this can help to relax both them and you. As you find your center and remain calm, then you are better able to get yourself out of dark feelings, and discover a light at the end of the tunnel!

TIP #4 – Watch a Movie or Read a Book: Sometimes watching a happy, joyful movie is all that’s needed to bring us out of a dark place and make us feel better! This can also happen when reading a book. If you find a movie, or type of movie that helps, or a genre of books, please let us know. They might also help someone else!

TIP #5 – Find Something That Makes You Smile: One last option is to find something that makes you smile or that gives you joy. Whether that is going for a walk in nature, taking some beautiful photos, or doing creative painting. Whether it’s exploring meditative drawing like Zentangle, or sitting and doing a jigsaw puzzle while listening to a motivational talk… anything that makes you smile can help lift that dark cloud!

Migraine Warrior

Life with migraine can isolate and cause intense loneliness. Sadly, this often results in a sense of utter physical emptiness on top of trying to live with all the ongoing symptoms of migraine attacks. However, we are migraine warriors! By realizing that, and by being proactive, we are able to reassure ourselves that we are not alone. From the moment we find our migraine warrior tribe, the similarities of experiences foster ‘real life’ relationships. Knowing others who live with migraine is an immense comfort. So when YOU need support and connection during ‘dark times’, remember these tools, and don’t be afraid to reach out for a helping hand.

If you would like to connect with other migraine warriors, join our Migraine Meanderings Facebook t group. This is a welcoming space where you can discuss all things migraine, as well as finding the support and connection you need to discover that you are NOT alone!

Let Us Know…

Do you feel isolated because of migraine, and if so, are there specific times it seems to happen? How do you manage feelings of isolation? What kind of support system do you have to help when you feel alone? What helps YOU manage the isolation and negative feelings?


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