Helena* recounts her experiences of ‘always’ and ‘never’ feeling judged or misunderstood by a spouse or partner because of migraine.
‘You always get sick when we visit my parents,’ my husband would complain, petulantly. As if it were my fault and I deliberately brought on a migraine attack. Or, worse, that I found it stressful to visit his parents and that was why I would have an attack. He thought that’s how it worked. And that reflected badly on me, as how could I find being with his parents stressful?
I didn’t understand the idea of ‘let down migraine’ at the time, but I knew a change in routine, the discomfort associated with spending a few hours in a car and the anticipation of angering my husband if I had an attack all served to make one more likely. He seemed to find it embarrassing, even a personal affront, if I had an attack and had to excuse myself from a social event. He sometimes suspected that I was faking it. He would garner sympathy from his family when I had an attack – not sympathy for me, but for him, because his wife was unable to make him dinner and spend time with him.
I thought I was part of the problem. I disliked talking about my migraine disease and how badly it was affecting me. I would pretend I was fine when I wasn’t and would try to carry on to save him the discomfort of having to deal with my incapacity. If I communicated better, maybe he would be more understanding. He was a clever man and there was no reason he couldn’t understand how migraine disease worked. But the problem was, he didn’t care to. He made me feel like the migraine disease was a weakness, one of many flaws he identified in me, and that people with flaws like mine were lucky to have a partner at all.
I thought the problem might be that most of the symptoms of migraine were invisible and thus ignorable (unless you start vomiting, which is harder to accuse someone of faking). But then one time when we were on holiday overseas, I got seriously sick with septicemia, where bacteria gets into your bloodstream – a condition that can be fatal. I had severe back pain, high fevers, chills and rigours (where you shake uncontrollably) and was in hospital on intravenous antibiotics for several days. My husband had first been in denial that I was unwell, and then was annoyed that I was ruining his holiday. He went out shopping and to a jazz festival because he was too bored to stay with me at the hospital, only returning to eat the hospital meals I was too sick to stomach and to sleep in the bed provided for family ‘carers’. He wouldn’t let me talk to my parents or friends.
I finally realised that my husband’s judgement of me because of migraine disease was an indicator of a dysfunctional and abusive relationship. I left him. It took a while, because when you’ve been brought up to believe that marriage is for life then it’s hard to let it go, even when you’re being badly treated. But it taught me something. My migraine disease could be a useful relationship barometer. I could screen potential future partners according to how they responded to my migraine disease.
My current partner passed the migraine screening test with flying colours. He did not see my migraine disease as a flaw but rather as an opportunity to show his love and support. He listened and learnt about the disease and encouraged me to prioritise sleep, exercise and healthy eating. Instead of belittling me for my weakness, he helped me to see beyond what I thought of as my limitations and achieve dreams that I’d considered impossible. He proved to me that migraine disease isn’t invisible after all. He can predict when an attack is imminent, sometimes before I realise it myself, picking up on subtle signs such as mood changes and fatigue. He knows I struggle with speaking clearly and word finding during an attack and I can be clumsy and not think straight, so he will take extra care and look out for me. I feel safe to tell him what I am thinking and feeling, so talking about my migraine disease with him is easy.
No relationship is perfect, because no individuals are perfect. But we don’t have to be perfect to treat our spouses and partners with love and respect. And we don’t have to be perfect to expect and deserve this love in return. Everyone has their own issues, physical, emotional or spiritual, if not now, then in the future. Far from making me unlovable, my migraine disease is a useful barometer of the health of my relationships. Paradoxically, it can help me set boundaries and let go of toxic relationships sooner than I otherwise might have, making room for healthier and happier ones.
*not her real name
From Migraine Foundation Aotearoa New Zealand:
Thank you Helena for sharing your story and we're so glad you found a partner who supports you and understands the challenges of migraine disease.
To find out more about migraine stigma in New Zealand visit our Migraine in Aotearoa New Zealand survey key insight reports: Feeling judged or misunderstood
Migraine stigma from friends and family and Migraine stigma from health professionals
Do you have a similar story to tell? Sharing your experience may help someone else struggling to find support.
You can also share your story in on our Voice of Migraine page. Email us: email@example.com