If you experience chronic headache or migraine, I hope you know how very strong and resilient you are. It takes a lot to push through the day when you wake up with pain yet again. But, as people with this condition well know, it affects all domains of life, including personal relationships - there’s no way around it. 

In a large survey study of 13,064 people with migraine, the Chronic Migraine Epidemiology and Outcomes (CaMEO), 8.6% of respondents had chronic migraine (more than 15 headache days per month). The rest had episodic migraine. Amongst the participants with chronic migraine, 78% of those who lived with their partner, 44% of those who didn’t live with their partner, and 37% of those who were single answered that migraine causes relationship problems, a percentage nearly twice as high as for episodic migraine. 

Learning how to navigate chronic headache or migraine in a relationship doesn’t happen overnight. It is part of the process of getting to know each other, and the disease itself.  

Be open and honest about how you feel.

Your first instinct may be to try to “protect” a partner from what’s happening to you by minimizing your symptoms or not sharing how you are truly feeling. But this can lead you to feel lonely, and for your symptoms to worsen.

Even if your partner knows other people with headache disease, they need to understand that your situation is unique because every person with this disease is affected in a different way. Plus, things are always in flux since diseases and their context evolve over time.  

About two-thirds of people with chronic migraine feel guilty that their migraine makes their partner’s life harder. But being there for a loved one is not a burden at all, and a loving partner is happy to do whatever they can to help, sees you for who you are, and admires how you manage life with this disease. 

Tell your partner how much you value their flexibility.

Chronic headache takes precious time away from relationships because it can be so isolating; social events, bright lights, noises, scents, alcohol, changes in schedule, or social interactions may trigger or worsen attacks and/or symptoms. Partners of people with chronic headache or migraine will undoubtedly learn that plans often need to be rescheduled. 

When living together, a partner must be ready and willing to step up and help with household chores, food shopping, childcare or other duties. And it can impact your sex life too; about two-thirds of people with chronic migraine sometimes avoid sexual activity because of their pain and/or symptoms. 

Chronic headache diseases are very disabling. In the US, a little more than one-third of people with chronic migraine are employed full-time. Often times, people with chronic headache give everything they have at work, and then are unable to do anything once they come home. 

In the CaMEO study, nearly half of the participants with chronic migraine noted that at least one relationship had ended or experienced problems because of their migraine compared to about one in five participants with episodic migraine.   

Share your personal experiences and preferences with your partner.

A chronic disease can be a lot to try to understand and process for your partner. No matter how much they read or learn about the disease, it is so helpful for you to guide them through your experience, explain how the disease affects you specifically, and tell them what helps and doesn’t help. This is best done progressively by discussing real life examples as they come up, once you feel physically and emotionally ready to have the conversation. (You may want to be alone and/or quiet when things are very bad. Unsurprisingly, about 70% of people with chronic migraine are easily annoyed by their partner when they are having a migraine attack!)

For example: 

• “I really appreciate that you brought me water earlier because standing up worsens my headache.”
• “It was so kind of you to summarize that news article for me; my eyes hurt too much right now for me to read.”
• “I wish you could eat food further away from me when I’m having an attack because the smell makes me nauseated.”

Other ways to communicate information about the disease itself may also depend on your partner. 

• Some may prefer reading facts and learning more about the anatomy and mechanisms of your disease, in which case your headache doctor can suggest some quality resources, and Neura has helpful resources about various headache diagnoses. It is super important to keep in mind that the chronic forms are much more disabling than the episodic (less frequent or shorter) forms of the disease.
• Some partners find it helpful to accompany the patient to some medical appointments to gain understanding of the disease, show their support, and ask questions. When the patient feels comfortable with it, I’m always happy to see partners join medical visits (for part or all of the visit). Virtual visits make it even easier.  
• Some may be very responsive to art: artwork you created taking inspiration into your disease or artwork from others with the disease. 
• Some may learn from forms of entertainment that also educate, such Ashley Hattle's book “Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man” or movies like “Out of My Head” about migraine. 

Chronic diseases are so challenging, and having a good support system helps.  A partner who makes you feel loved and cared for can help you feel like you are fighting chronic migraine as a team. It may take time and requires open communication, but it can also make the relationship stronger and improve some aspects of living with the disease. 

It is possible to still feel lonely while being in a relationship. Discussing your feelings of loneliness with your doctor may help. It is also very important to discuss with your headache provider how limiting your disease is, so they understand the impact it has on you and do their best to help optimize and personalize your treatment plan. If you don't have a headache provider, you can join Neura today, and speak with a board-certified neurologist specializing in headache medicine.