There is no manual for living with chronic migraines or for living with someone with chronic migraines. Not because people haven't tried or because people don't want one. No, it's because we are all unique individuals dealing with varied social, environmental, economic and biologic factors. Plus many of us are also dealing with one or more comorbid diseases in varied combinations. We can't pretend that these things don't have a huge impact on our ability of cope and manage our chronic migraines. We also can't pretend that this complexity isn't hard for everyone involved.
Here's the thing - just because there is no manual doesn't mean we don't have some universal needs that our loved ones can assist us with. In fact I believe there are 3 simple ways to help someone suffering with chronic migraines or any chronic pain disorder.
1. Accept the simple fact that you can't understand what your loved one is going through AND know that you don't have to understand in order to be helpful, respectful, kind and loving.
2. Always believe them when they tell you what is going on. We are not exaggerating or lying to you. Just because you can't see our pain, brain fog, nausea, or exhaustion doesn't mean it's not real or serious. We deal with so much disbelief from the outside world. We need those closest to us to accept our truth and stand up for us. You can't imagine how helpful, respectful, kind and loving your belief is and the huge impact it has on our ability to cope.
3. Follow our lead and support us on our journey. We have very difficult decisions to make each and every day. We don't need you telling us what to do or that we are doing it wrong. We need you to love and support us through our decisions. Sometimes we push ourselves to do something that is highly important to us - follow our lead. Sometimes we need to pull back from an overwhelming task - support that decision. You can't imagine how respected, helped and loved we feel when you are our ally - steadfast by our side.
I don't doubt that those who love us want to help us but I think it can be hard to know how. I firmly believe that what we need most of all is to feel respected, steadfast support and loving kindness from those closest to us. It will buoy our spirits and give us a boost to deal with the onslaught of physical, emotional and mental horrors associated with a life of chronic migraines or any other chronic pain condition.
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