Being diagnosed with any life changing syndrome or illness changes everything. Most people can’t instantly accept this or make any changes in their lives until they absorb this new situation. No one would ask for this and it’s just as shocking to our emotions as a divorce or death of a loved one is. The five stages of grief generally comes up during the first months or years; denial, anger, bargaining, grief and acceptance (Kubler-Ross). I know this model well. I was diagnosed 16 years ago, it took me almost two years to really start searching for answers.
I don’t expect you to be any different, but I do hope that after coming to terms with your pain you discover how to seize hold of the concept of wellness, beginning with taking back your own life by using “personal responsibility” (Copeland, Mary Ellen). I will discuss this further in future blogs, lets just keep the happy thought that there are ways, like the one mentioned above and others, which can enable you to work towards a new joy in your new life!
In the beginning, give yourself a break or three. Draw boundaries with family and friends (they truly don’t understand what is happening to your body or, your mental stress load) by taking the time to draft a loving but firm letter of what you can and can not do at this time. After it’s written reread it at least once, edit, hang on to it and dispense as needed. Remember to tell them how much you appreciate their support. Don’t forget to inform them right away when you are having an extra bad day. Tell them that you sincerely don’t mean to lash out, but you are not doing well today. When they feel hurt by your roller coaster emotions, remind them that it’s a bad day for you and that you are doing your best.
Please search out support groups! Brick and mortar or online groups are vital to understanding your pain and feeling that support from peers who have walked in your shoes is irreplaceable. This blog is just one of many places you will find on the internet; when I was diagnosed, I found exactly three! The amount of information available on the internet today is staggering, but, that is much better than very little. A word of caution; be discriminating. You know what types of treatments have worked well for you in the past, but, they may not work now. Trust your own feelings first; your body will let you know if the prescribed treatment or alternative treatment is working, for you. Don’t instantly get caught up in the maze of options out there. Take your time.
Another important thought about the beginning of your journey is this; your friends and family, who have loving and good intentions, will find many solutions for your chronic pain. Politely thank them and if it doesn’t seem right for you, ignore it. Hopefully this will be the end of the discussion. If not, and you value the relationship, try taking them to coffee or tea and explaining that you appreciate their research but you are already trying “blank”. Remember, you can always use the letter you wrote if all else fails.
I hope to create an environment of daily support for my peers. My intention is to offer multiple experiences and perspectives. I will include research, news, links to sites, forums, chats, other blogs, hopefully humor and tools you can use. Remember, there is no one right way to have chronic pain; actually, chronic pain is vastly different from person to person with common threads. I hope you find a place here, and elsewhere, that helps you to become the best person you can in your new journey. In the meantime, run a Epsom salt bath, watch the birds, read a good book, meditate, journal, take a nap every day. Be good to you!!
Lucinda, MSW:MH, ILS, Fibromyalgia Peer Advocate/Life Skills Coach