I discussed the need for a kind letter to family and friends that helps them understand your new life with Fibromyalgia early on in this blog. Today, I am going to post a letter that newer Fibromyalgia survivors can copy. Use it as is or as a template if it fits your needs.
I know all too well that I have become a different person. It is not in my head, it is in my body. I struggle to survive and live well with this chronic pain. Some days I am able to be joyous, other days I can only stay in bed or on the couch and be furious while my body is in screaming pain. All of these days, I am hurting. It is only the degree of pain that differs. My pain can change frequently. I might wake up in the morning feeling alright and by that afternoon be unable to do anything more. It can fluctuate from minute to minute, or it may hit me all at once. What I need from you most is for you to know that I am not upset with you. Despite my irritation at new self and my unintended lashing out, what I am really angry at is my pain and inability to perform simple daily life activities. I am so very sad about all those activities we once shared but now frequently must cancel at the last minute. Worse than that is when I have to let go of those special times we treasured. I am not only missing out on these activities, and our bonding time, I am feeling overwhelmed with loss and guilt.
The person you care about is still in here. I get buried from constant pain that moves around body. I get frustrated because my brain frequently forgets the simplest of things like returning your phone call. I beat myself up because I have too many days when I can no longer accomplish the most basic of activities; work, cleaning house, driving, shopping, keeping track of preplanned outings I scheduled, and so much more. I become lost in grieving, filled with shame and guilt.
I want you to know that while I appreciate your desire to offer me a cure, it is my choice if I try to use it. It is still my body and I still understand my needs. I will know if it is something that I feel will help me. Perhaps it will help later on. If you want me to remember the procedure, ask me for my journal and write down the information in my section labeled “medical” using simple but complete information on where to find it later. Then, let it drop away from our conversations. Please don’t push these ideas at me. I get angry because I too am frustrated that there is not “a” cure for me. I am working at my new pace. I really am trying to find methods for my Wellness plan. One that allows me to be myself again, instead of remaining hidden underneath my pain.
My self-esteem is at an all time low these days. I work as hard as each day allows to. There are days I am a successful “normal” person and there days when all I feel is the failure. This is not your fault. This is not my fault. This is Fibromyalgia. I am not suffering from depression, but I do have depressed days. Please do your best to understand. If you just can’t tolerate me during these days, know that I understand, that I am not upset and won’t be angry at you later if you need to leave. When I feel sad it helps me more than you know if you perform acts of kindness; send me a humorous email, make me cup of tea or just tuck me into bed. There is no talking me out of this mood, it will only cause more grief to us both. Acts of kindness help me to uncover my esteem as they remind me that “I” am still worth caring about.
I care about you all. I am trying every day. I hope I find these methods soon to bring back at least some of the happy me and decrease the sad, painful me. Try to remain patient and compassionate. I know better than anyone that tolerating this new person can be difficult. Taking the time to understand my invisible syndrome helps us both. If you don’t understand, please feel free to ask me about it on my better days. There is very good information on Fibromyalgia on the internet or in books. It is important to remember that like all chronic illnesses, they have similar symptoms, but just as we are all unique individuals, the predominant features of my chronic pain will also be unique.
(insert your name)
Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Adviser