An Open Letter to My Doctors
“Please don’t give up on me!” I find that thought going round and round in my head every time a doctor’s appointment is pending. It’s a silent plea that rarely is verbalized but which trails so many of us doggedly. Even when we've had good experiences with the medical profession this concept of "giving up" often lingers. Interestingly, it was a conversation with a pharmaceutical research scientist that helped me put it into perspective recently. He pointed out how migraine disease is often treated differently than other diseases. There is more of a tendency to give up, both ourselves, society and even healthcare professionals. It is more likely for people with migraine to be told to “accept” things as they are or accept minimal improvement.
Facing migraine care challenges
Personally, I've been really privileged to see some of the top certified headache specialists in the country since moving to the USA. However, it hasn't always been a smooth path and I frequently hear that from others also. There are frequent struggles with insurance, a sad lack of certified headache specialists, and, most frustrating, sometimes a discouraging lack of understanding.
Every time I hear someone say that their doctor has “fired” them I wonder, “How is that even possible?” And my heart breaks. For them, for all of us living with migraine, for our children who are at risk for inheriting it. We long to see change in the treatment of this disease and other headache disorders that are still so misunderstood, not to mention the other health conditions that so often tag along for the ride! Somehow, I’d like to try and reframe things – after all, wouldn’t you?
And so, here are some thoughts to share with our doctors as well as our friends, family, teachers, and employers. Maybe you resonate with some or all of these:
- We are not weak; we are strong!
- We do not give up easily, but actually persevere through unimaginable pain.
- We simply cannot always push through and even if we tried to, that may not be the safest thing to do.
- Please don’t feel like you always have to “fix” us; sometimes validation has the most powerful impact.
- We know that we're stressed, but on those rare pain free periods an incredibly happy person emerges. Please don’t tell us to reduce stress - most likely, we're already working on that!
- If positive thinking worked, we’d feel great! We truly would love nothing more than the placebo or any other effect to happen as long as it brings relief!
- If we're afraid to try a new medication or treatment there’s a reason for that; it’s not lack of cooperation or unwillingness to “get better.”
- We know you’re short on time, but we long for you to partner with us in this journey and that means somehow finding the time to listen.
- We have hopes and dreams for our lives – hopes that are frequently challenged and dreams that often seem unreachable, but still we hold on to them.
- Sometimes the most powerful thing to say is, “I’m so sorry you’re dealing with this. I hear you and I’m not giving up!
Bright light in a dark disease
To those awesome doctors who partner with those of us living with migraine, cluster or other headache disorders, and who refuse to give up – we value and treasure your dedication and compassion more than you can ever know. You are a bright light in the midst of a dark disease, and you are helping make a difference for us now and for the future.
Have you shared your migraine story with us yet?