The Perfect Friend
I left my rheumatologist office one day so empty inside, so alone with my own body, defeated, sad, and mostly abandoned by life. It is hard when your doctor wants to give you answers but the same doctor cannot relate to you much because He or she doesn't have the illness, or at least I don't know any Doctor that does. So, I said to myself, I have to find someone that is trained somehow on the illness that can give facts but can relate to me in some way. It has to be a person that maybe has a limited support system like me, and perhaps with a small family, or that had to quit their profession because of the illness.
Manifesting my needs
So, actually, while I was getting ready to drive home I start to cover myself in sunscreen because the ride is about an hr to my house. I intentionally started creating a list in my head of this ”perfect friend” I was going to find one day.
My imaginary perfect friend had many attributes, has been with lupus for a while, understood and have tried many treatments, have managed to have some kind of support in the community, knew how the system works, is a gentle soul, wants to talk about other things that have nothing to do with being ill. And maybe if I'm lucky this friend would have resources to share with me. My list also had a dream. That one day I could be knowledgeable enough that I could do the same for someone else.
Finding the perfect friend
I started looking online for organizations and programs that could help me, I wrote letters to different places, I asked my doctors, my therapist, even my social worker and no one knew anything. They will all redirect me to support groups on Facebook, but that wasn't what I was looking for. I specifically needed an educated patient that could be my guide and had the illness at the same time.
After weeks of looking
I found this hospital located in New York called Hospital for Special Surgery. I live in Minnesota, this hospital has several programs for people with lupus. The one program I want to share with you is the program called The LupusLine, they serve local, national, and international lupus patients. This program offers peer support counseling over the phone. They will do an assessment on your situation and will match you with a very well trained lupus warrior just like you and this person will call you on a weekly basis, with guidance on how to manage all the aspects that are involved in the life of a lupus patient. This program is absolutely ”free”. Their phone number is toll-free 866-375-1427 LupusLine®️.
I truly hope this can help you as much as it did for me.
Lina Tobey, BSW, BA
Magical Patterns- Founder
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
Who do you turn to first for emotional support? (choose up to three)