Spoons, and How to Start a Good Conversation

Spoons, and How to Start a Good Conversation

I have a patient with severe chronic migraine who I took care of many years ago. She got somewhat better and was able to complete her education, get married, and have twins. After that her migraine worsened, and we have not gotten her migraine into very good control. A few months ago, I judged she might be at a place where she could not work but might be able to volunteer to work a few hours for Miles for Migraine, a charity whose board I am on. This is something I try to do carefully, and only if a patient seems to be at a place in their life where it might make sense for them. She seemed interested but she never did volunteer. At her next visit, trying to not let her feel bad about it, I said: “I understand, you just didn’t have the spoons for it.” This led to an explanation of spoon theory, since she had not heard of this.

Apparently, our conversation hit a chord. She told her husband, and he went out and bought a beautiful antique spoon, which he had made into a necklace for her.

Using spoon theory to explain migraine

My patient’s mother had demonstrated a lack of understanding about her disease, and had been saying those little ignorant things (I call them micro aggressions) that are so hurtful to people with migraine. When she saw my patient wearing her new spoon jewelry they had a conversation about it that helped her mother to understand her disease better, and improved their relationship.

Confronting migraine stigma

As a community, we need to find ways to address the stigma of migraine by confronting it and having conversations that may be difficult, but just might change the hurtful perceptions of others. We cannot let a culture that is so cruel and ignorant toward people with headache diseases go unchallenged, and we know that only the people with the disease, or in some cases their loving family, can change disease perception.

Migraine sympbols to raise awareness

We should use the symbols that are out there, like spoons in this case, or perhaps find new ones to catalyze these all-important conversations. CHAMP, the Coalition of Headache and Migraine Patients, has a committee to think of new ways to do this. We have finalized recommended language and images to use and not use that we hope will reduce the stigma of migraine. We are hoping to find ways for patients to share the successful and unsuccessful ways they have confronted their stigmatizers, so we can learn from one another.

Right now, there is the purple ribbon, the Miles for Migraine and Runnin’ for Research walk/runs and of course, the spoon. Are there other symbols that could represent another aspect of migraine disease (or cluster headache for that matter) that we should be using? I think another, surprising and interesting symbol might be helpful. Do you have a suggestion?

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Comments

View Comments (3)
  • KristenL
    1 week ago

    I have had chronic intractable migraines with vertigo for 10 years now and the stigma that its just a headache and shows no visible symptoms is sometimes much more damaging. Family members struggle to understand because we look normal but our physical and mental abilities are severely impaired. I used to be a sharp minded working professional but now am disabled and have to write down in advance notes on anticipation of questions from doctors because I can’t think as quickly right at the moment. Family members just don’t understand how hard it is to process conversations, it’s like pushing through fog and pain because it’s your brain being affected and think you are either being argumentative or unreasonable when you can’t come back with a credible response and they get impatient and angry. I read from another migraine sufferer who was also a breast cancer survivor who said in a way the cancer was easier simply because she got much more support from family & friends because that was something they could understand. It’s very difficult to articulate to people what you’re going through so I’m just wondering if any others have found a successful way to communicate to family and friends.

  • Ann
    2 weeks ago

    I really don’t think the stigma of migraine will ever go away until it is labeled exactly what it is: A neurological disorder with headache as one of its symptoms. I’ve suffered from migraines all of my life. First hormonal in which I did suffer from pain plus other symptoms. Later after menopause, the pain disappeared but the abdominal, vestibular, ocular and now premature atrial contractions symptoms increased. These symptoms are worse than having pain because meds did ease the pain for me but nothing eases the blindness, the reeling dizziness, the contractions and the terrible stomach cramps. I have tried everything. I have been given every test to rule out other disorders. Doctors have tried to help me but nothing works. The name has to be changed to remove the stigma. The word headache has to be removed. I am in no way making light of the head pain. I endured that pain for 40 years. I am just trying to suggest a way to remove the stigma and lack of respect. And one way is to move on and call it what it is: a neurological disorder or whatever name that will provide sufferers with respect. I also suffer from RLS and no one took that affliction seriously, and in fact, found it humorous until the foundation changed the name. Why can’t the word headache be removed? The word cheapens a most debilitating disorder.

  • wyoung
    1 week ago

    Migraine IS a brain disease but I am not sure that emphasizing this reduces stigma, unfortunately. Neurologists have been trying to do this for decades without success. Depression did not get very far with this strategy. People in general don’t want to associate with disordered brains.
    This is cruel and unfair and the way it is.
    We need symbols that convert stigmatizers into allies who see people with migraine as the noble warriors that they are (even if they don’t yet see it in themselves).

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