Erythromelalgia Pain Relief- It’s a Family Affair

It’s a well-known fact that those of us with erythromelalgia suffer. We suffer immensely. What is less talked about is the suffering of those that love us- our EM support people. I am a therapist and mental health provider, and even still, I could not let in how my disease process had affected the people I loved. The guilt and the shame threatened to overwhelm me. I suffered in a sort-of silo and so did my support people.

Now that I am on the other side of EM- now that I’ve put my disease into complete remission- I am able to see that while I had lost entirely too much, they had lost many things as well. My husband lost his capable “can do” wife and the eager travel companion at his side. My father lost his caregiving daughter and became the one selflessly giving care. My nephew lost the crazy aunt who chased him barefoot in the grass on a hot summer day. My beloved dog lost his morning runs and afternoon walks. And in the losing, dreams were lost. The hot tub I sat outside of the eve before my wedding while everyone else immersed themselves under the desert sky. Parenthood. Christmas trees never erected. Trips not taken- or taken alone.

I hear it repeatedly. “I have a loving family, and yet I feel so alone. They just don’t get it”. And how could they if they’ve never had this dreadful disease? EM isolates those that suffer even when support people are doing everything (and then some) in their power to be supportive.

My hero of a father is the reason I have my doctorate. He committed to being my hands and feet. He humbly- and always without resentment- did the dirty work of daily life- cooking endless meals, driving me to the hospital for rotations, shopping for groceries, doing my laundry, and ironing my clothes. I lost so many small dignities, but he would bridge he distance. He would not let me relinquish my dream.

I know he worried worries I will never hear spoken. I know he prayed prayers that probably sounded like petitions. I saw him beg doctors in world renowned hospitals to help me. I’m sure he would have physically taken a portion of my pain had that been on the menu. I know he suffered- in a different way than I suffered- but he suffered nonetheless. Having healed from EM, I am now able to understand my loved one’s own losses related to my EM without feeling overwhelmed by guilt and shame.

From a healed place and as a labor of love, I have created an EM Support Person Home Study Course. It is what I wish my family had available to support me in the midst of my darkest days, and boy were there dark days, and it is what I wish I would have been able to offer as a support to them. With these tools, I believe EM caregivers can put in less worry and emotional work while supporting their EM person in a way that feels over-the-moon supportive.  I invite you into this offering which is forever dedicated to my dad. When I ordered my graduation stole, I purchased two. It was my honor to place it over my father’s head and around his neck. It was my way of saying thank you when words eluded me, and shame was still suffocatingly strong. So let me as am EM person say it for your EM loved one that might not yet be have the words- Thank you for being our hands and feet.

 You can purchase my Home Study Course for EM Support Person here.

You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.

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