This is an open letter to my friends when I was well and to some members of my family who do not understand (some do not even try) this disease.
Letter to my family and friends about fibromyalgia
not trying to hurt anyone or feeling guilty, I just want to share what I feel with you in the hope of achieving greater understanding and support from you.
I know you’re very busy with your life, I was too busy before, but it will only take a few minutes of your time.
I know it is very difficult to know what to say or know how to behave when a family member or friend has a chronic illness and there is no cure for it. Even if it is not mortal, do not think that it is the reason why it is less painful or less disabling;
just as difficult and difficult it is to face this new situation, I still love you in my life and I need you much more than before. It’s about time I have to ask you to be closer, it’s not complicated and it’s just very simple things. Every now and then spend half an hour of your time with me, have a coffee together, if I feel good, take a walk, call me once a week just to chat a few minutes. Simple things
Please do not forget me when you are planning or withdrawing from your life. It becomes a very complicated situation, painful to feel socially separated. I know it’s annoying when you have someone to do something, go to the movies, dinner or a birthday party and that person can not go, but if that happens do not make it a personal matter, it just means pain or my level L energy does not allow me to take a step. It’s not something I decide when it happens.
If you come to see me, do not take it badly if I’m on the couch or on the bed, the pain and fatigue make you spend a lot of time, but your visit will make me feel good and I will enjoy the time you dedicate. Although it is difficult to understand, it may take several hours after the visit to recover, it is exhausting to have a conversation on many occasions, but I would greatly appreciate the time spent with you.
Ask me, ask about my illness, I can lend you a book and recommend web pages where you will find information to better understand my condition, I had to do it myself to better understand this disease. Do not ask me for commitment or without answering the answer.
Tell me if you’re available and I felt one day need to talk and think of me like you that I do not like to spend all the time talking about illness, I can still talk about more things with you, cinema, sports, our children … to the thousand things I talked about before getting sick.
You are a very important part of my life and I do not want to lose you. It is important for me to continue with me on this journey through life.