Sometimes we migraine.com health advocates get very raw, personal letters and comments from community members. Though I have been a migraine health advocate for many years now, I don’t hold a medical degree and cannot give any official medical advice. That said, I can encourage people to seek assistance when and where they can and try to be on their side and cheer them on as they attempt to make some positive changes that can perhaps improve their migraine patterns or at least improve the suffering they associate with their illness.
What follows is a letter I recently composed to a migraine.com community member who wrote to me. This person was at his/her wits’ end and was reaching out for help and advice. I removed all hints that would reveal the person’s identity before sharing this with you.
What would YOU tell someone whose disability coverage has been revoked because a team of doctors can’t prove through tests that anything is “really” wrong? What would you say to someone who is depressed and despondent who can’t be honest with his/her family about how much pain and suffering is endured each day?
I want to tell you how sorry I am. How I understand that what you’re going through is a debilitating and demoralizing process. That you don’t deserve to be in the position you’re in. I am so sorry you’re feeling so bad and have all this other stress (disability being rejected, having to take care of your family, etc.). You are in a tough spot.
You listed the healthcare practitioners you see for migraine treatment, but I didn’t see the term “migraine specialist” or “headache specialist” listed there. If you don’t already have a migraine specialist on your side, it’s definitely time to consider getting one. If you do have a specialist on your team, it’s perhaps time to find another one who might be able to add insight to the situation. Here are some links to articles on Migraine.com that talk about migraine specialists and when it’s time to seek their help–I firmly believe you are at that point.
- Making the Decision to See a Headache Specialist
- How Are Migraine Specialists Different?
- Who Works with Migraine? The Healthcare Providers You Can Turn to for Help
- Would You Skype with a Headache Specialist?
Next, I would encourage you to find someone who can help you deal with the incredible and cumbersome amount of stress you’re under. I personally have had a lot of help from my mental health therapist and from doing mindfulness practice. It may seem like you don’t have the time or money for either, but I assure you it will be worth it and can help you gain new perspective on your illness as you continue to fight for your rights for better care and disability coverage. A mental health counselor/therapist can help you deal with these overwhelming feelings and allow you to have someone who is there just for YOU, someone to hear all the ugly ins and outs of your life with no judgment, someone whose entire role is to dedicate an hour of his/her time to listening to you and helping you come up with better coping skills. The mindfulness practice can get you more centered and more at peace with your pain–I know, it sounds crazy. But pain doesn’t automatically equate to suffering, and through mindfulness you may be able to re-center and be more in touch with your body in a judgment-free way.
Speaking of disability, there are several migraine-specific articles and resources on migraine.com that deal with disability. Here’s a page full of links that should be helpful.
I am so, so sorry you’re going through this. Take care, and let me know how things are going.
Janet G., “The Migraine Girl”