Hi All, this is a letter by Jenna Alexander, who is a member of one of the support groups to which I belong. She wrote it about her experiences with Fibromyalgia - one of the invisible chronic illnesses which can change the course of a person's life. I asked her if I might share this, as it is both eloquent and accessible. She kindly granted permission. I hope if you see yourself in this letter, you feel not quite alone and I hope if you see loved ones and friends in this letter, you give yourself permission to be ok with NOT understanding even while you accept that your loved ones and friends have limits that are moving targets from day to day. It is ok to not know the answers and changes of the illness, but to love and to accept the PERSON for WHO HE OR SHE IS!
Laura
I just wanted to share this with all of you, my fellow fibro warriors. I have finally started to feel better after the long months of constant flaring this year and I have decided I am not letting go of that positive attitude. This is a letter I wrote to my family and friends on FB since my writer's mind is FINALLY clear enough to actually write something I think makes sense (lol!) and is possibly maybe somewhat profound? I don't know. Tell me what you all think if you can please ^_^
Love you all, Gentle hugs! Hope everyone is enjoying good weather and a pain free day!
Jenna
A Letter to My Friends and Family: My New Positive Outlook as a Fibro Warrior
Dear friends and family: I would love it if you could all read this and tell me your thoughts ^_^ (I know it's long, but I am at a turning point and had alot to say)
This week, I have been working very hard to change my attitude about the life I have been granted.
With all of the health issues, new diet restrictions, new doctors, new meds, new living situations, new money issues, the previous 2 TOUGH semesters and the upcoming new experience of student teaching, I have lost sight of a positive outlook. I have been dwelling in the negative, wondering "Why Me?!?!", raging against the things I can't control, and allowing myself to give up simply because anyone else in this amount of pain and mental fog would socially be allowed that option.
But I know I can't keep doing this. I have pushed so many people away in my life because their needs that I can't fulfill make me feel worthless or their constant positivity and comments about how "everyone feels that way sometimes" make me feel belittled and crazy. Constantly feeling like no one understands the pain I am in or the horrendous struggles I have gone through to fix it has made me angry with people I love. I have also sabotaged my own health at times by trying SO hard to be the fun person everyone wants me to be that I make myself sicker, and then I am even angrier with those people who I feel just can't accept my limitations and still want to be around me.
So today I am making myself a promise. I am not going to push people away anymore and I am not going to look at this life as a punishment, asking God everyday what I did to deserve this. I didn't do anything wrong and this struggle God has put in my path is meant to make me stronger not hateful. I am finally starting to feel better after months of wanting to cry and scream everyday and I am not going to let that good feeling go.
I am promising myself today that I will love and show patience to even those who don't understand instead of envying them and being angry with them. However, I also promise myself that I will no longer feel bad about my limitations. I won't make myself sick for someone who only wants to spend time with me when I am in a FANTASTIC mood. It's just not realistic. A TRUE friend will want to be there for you through all the good AND all the bad. I will work as hard as I can to overcome all my limitations in a HEALTHY way and to stay positive about it so I don't bring anyone else down, but until I can overcome my limitations, I can't keep fighting against them- especially not for people who don't truly care about me as a friend.
So, to all my friends and family I want to tell you this- If you can't love me and want to spend time with me in both my best AND my worst times, than I can't have you in my life. Your complete refusal to understand is your choice and shows me that you are not worth my time and I am not worth yours. I understand that for some people, having a friend with a chronic illness is just more than they can handle. That their own lives are to full of struggles for them to help me take on mine. It is ok, I get it, but please don't pretend to be my friend if you are one of these people. It just hurts both of us in the end.
HOWEVER, for those that love me and want to understand, but just haven't been able to yet, I want to apologize for being angry with you. There are many times when I don't understand my own disease, so it is unfair to expect you to just figure it out right away.
So, what I ask of you now is that if you truly want to be my friend, that you simply accept the fact that I know my body, I know my limitations, and just because I am not up for something doesn't mean I don't love you or want to spend time with you. If you can accept that and you can accept that my illness means the way I feel physically and mentally constantly changes (IE. 1 day or 1 hour I am cleaning like a madwoman full of energy, joy and completely clear headed and the next I am crying on the couch, sounding crazy, getting overwhelmed or falling asleep in my chair and forgetting what I said or did five seconds ago), then our friendship will make it.
Also, please don't be offended by my posts about Fibromyalgia. When I post articles, it isn't to make you feel like I am angry with you for not getting it. I am posting the articles 1. For myself so I don't lose them (lol) and 2. For you IF you want to get to know more. I want so desperately for all of you to understand and these articles help me share with you when I just don't have the words to explain (which happens more often than I imagined possible ;) ), I don't want you read these so you can pity me or baby me, but so you can truly see who I am right now and decide whether or not you can accept me for it, accept me for the fact that I sometimes can't function and I sometimes need help even though other times I act like superwoman.
So, I love you all and I hope our friendships will weather this crazy storm.
Sincerely,
Jenna Kaye Alexander
Fibro Warrior
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