Isolation and migraine
By: Dr Sophie White, Clinical Psychologist, Headache Group, National Hospital for Neurology & Neurosurgery, University College London Hospitals NHS Foundation Trust
Isolation and loneliness can affect anyone, regardless of age, physical health, or even the number of people around you. It may feel like either you do not have much contact with others; or perhaps feel disconnected in the relationships you do have. This is especially true when living with headaches.
Isolation is a big topic right now: the pandemic has affected our contact with others and we continue to live with the effects of this. You may have felt that the pandemic limited your contact with the support network or activities that normally help you to cope with headaches. Research backs this up, showing that people with headache conditions are more likely to experience isolation particularly during the pandemic. Loneliness also decreases the sense of being able to cope with or manage headaches.
In my clinical experience, people talk about isolation for one big reason: living with an invisible headache condition can be a lonely experience as no-one can really see what is going on. This can create a sense of being misunderstood, but it can feel just as hard to reach out for help. Friends and family can find this equally challenging: they may just see plans getting cancelled or may feel completely hopeless in how to help, which can make the headache condition seem like an even bigger problem. We know that these things are challenging for everyone: so what can we do about it?
Psychologists have long been working with people with painful conditions to find simple strategies that help to build relationships and reduce isolation. Here are some examples:
- We need to start by thinking about what we can do to start the changes in our relationships: we are unable to control the actions of others, therefore we have to start with our own. For example, in setting yourself a task of having a new conversation with someone you trust about your pain so they can better understand your difficulties and how to help you. Remember we can only control our own actions, not those of others.
- When starting a conversation about headaches, think carefully about how much you need to say, depending on whether you trust them and whether they might be overwhelmed by what you say. Keep it brief and constructive, even with one sentence explanation ready, can be useful. They want to know if you’re okay, so rather than saying “this is all completely awful and hopeless” think about changing it to something they will manage, e.g. “it has been a tough day today, so do just bear with me a little bit.”
- Have a sense of clear and simple instructions to give people so they know how to respond to your pain. Keep it short and sweet. Remember when they have been helpful in the past, e.g. “I really appreciated that you gave me some space during my attack but chatted to me after, that was really helpful thank you.”
- Our relationships can be affected by upsetting comments or misunderstandings about headaches. It’s important to try to manage our own reactions to this, to be able to stand up for yourself but not at the cost of your relationship. It can be helpful to read up on assertive communication skills if this feels difficult, such as: https://www.cci.health.wa.gov.au/Resources/Looking-After-Yourself/Assertiveness
- Try to think more broadly about what makes social situations challenging, like the build-up, the noise in the pub, or the fear of having to cancel? You may need to think of multiple strategies to creatively problem-solve here: the use of pacing to manage the time you spend out; adapting the activity (e.g. inviting friends round to yours rather than going to a pub), having a clear plan with friends of what to do if you’re going to need to be late or reschedule, or perhaps getting some support to manage the worries that come with these situations.
- Take time to think about what really matters to you in your relationships, so you can make sure you build something that is meaningful for you. Do you want people you can laugh with, or have shared hobbies with, or just someone to trust and talk to? We can still find the things that are meaningful to us, with and despite headache symptoms.
- Look out for different opportunities to meet others, both locally and further afield – maybe even others who have headache conditions too, either through the Migraine Trust or your medical team. The aim here is not to get ideas for medical treatments, but instead to find sources of mutual support. The choice to connect with others with similar conditions is down to you, so it’s okay if this feels too much right now.
- For those really struggling with isolation, it can be helpful to access the “social prescription scheme” through the GP. This is designed to allocate a link worker to help to connect the most isolated to different schemes of support in their area.
Headaches can be an isolating world. However, there are always ways to move forward and build rich and meaningful connections, even with headaches in your life.
British Pain Society (2013). Guidelines for pain management programmes for adults: An evidence-based review prepared on behalf of the British Pain Society. Available at: www.britishpainsociety.org
Cerami, C., Crespi, C., Bottiroli, S., Santi, G. C., Sances, G., Allena, M.,Vecchi, T., & Tassorelli, C. (2021). High perceived isolation and reduced social support affect headache impact levels in migraine after the Covid-19 outbreak: A cross sectional survey on chronic and episodic patients. Cephalalgia, 1-10.
Lewis, G. N., Bean, D., & Mowat, R. (2019). How have chronic pain management programs progressed? A Mapping Review. Pain Practice, 19(7), 767-784.
Lui, J. Z., Young, N. P., Ebbert, J. O., Rosedahl, J. K., & Philpot, L. M. (2020). Loneliness and migraine self-management: a cross-sectional assessment. Journal of Primary Care & Community Health, 11, 1-9.
West, C., Usher, K., Foster, K., & Stewart, L. (2012). Chronic pain and the family: The experience of the partners of people living with chronic pain. Journal of Clinical Nursing, 21(23-24), 3352-3360.