Everyone has an opinion, and everyone knows someone who is friends with someone that has a certain disease because they did something or took something. Well, it’s not quite like that. It just might happen that some people, who are unfamiliar with your health condition, may think that you developed your illness because of something you did.
Though it’s true that there are certain risk factors associated with pretty much all health conditions, that does not mean that you played any role in developing it.
Find out how fibromyalgia affects the everyday life of one patient.
After 30 years with this I have learned to act like the actor Peter Faulk playing Columbo. When a person/well intended friend comes up with a suggestion (ones we have tried years ago repeatedly to no avail) In my mind I put on my beige Columbo trench coat and take the confused but semi interested look. I listen patiently nodding my head. When they are finish I pause and say “That’s interesting . . . I bet you thought in the 30 years I have had this disease and the plethora of doctors, medications, research articles and the multiple research team guinea pig efforts I have been on for fibro that I NEVER thought or tried that. Yup, that would be a great idea if it worked for this disease. Kinda like telling a person with diabetes they should just rest more, then their diabetes would be under control and they won’t need to take their insulin any longer. Hey, would you like me to give you the names of the fibro doctors and researchers I work with and suggest this? No? I am sure it must work for you, but wait YOU don’t have 30 years of dealing with Fibro, (acting excited) do you??? (Acting really excited now) Because if you do that would be great!!! I would really like to find out how that suggestion is working for you and your fibro.”
That is an epic response. 🙂
I would Love to respond to someone with that! Just don’t think I’d be able to pull it off without bursting into tears and then being accused of being too self-centered or sensitive or anything else just as cruel.
Sounds like you’re frustrated too. Loved your Colombo methaphor! I’m going to try the same thing, only have the conversation end at the point where they give me the “recommended” advice on dealing with this BIZARRE illness. That way, the conversation will end and I can go on to do what I really want to do, which is speak about anything but fibro. I’m so sick and tired (and sick and tired) of trying to explain what this horrible chronic illness does to our bodies and lives! Few people (who do not have it) will take the time to truly try and understand. So I’m going to use my energy for something else. Let’s face it, we’ve only got so much energy!
Agreed
Those of us suffering with Fibromyalgia are blessed when we have even one single person that understands! Even though they don’t understand what we are going through…they understand we are suffering.
In my experience people ask how I am doing…then look at me like “Okay, you have all your limbs…a roof over your head…food in your belly…etc”. They have no concept of what life is like to feel chained to a chair and stuck inside of the same 4 walls day in and day out. My body may have turned against me but I still have my same mind (with the exception of fibro-fog) and a heart that yearns for who I used to be.
Yet I consider myself blessed because I do have that one person, the one that tries to understand, my husband. It may not take away any of the physical pain but knowing somebody cares enough to even try to understand is a blessing.
I hope you, my fellow fibro sufferers, have (or find) one such person in your lives to help get you through each day.
There are several studies that show that strong relationships are an important part of living with chronic pain and chronic illnesses. We are very glad to hear that your husband is there for you and tries very hard to understand. While he may not feel your pain, he goes through his own while seeing you in this state.
I don’t have even that, he has heath issues so needs help so he just expects me to do what ever he needs to have done! I really don’t believe anyone that doesn’t have this horrific disease has a clue. Some ask and like you said look at you like you have many blessings count them! I have had over 30 years since my first diagnosis and 2 years ago i went for another one only to be told,” You have Fibromyalgia” I wanted to say NO S@#$ Dick Tracy instead I said I told you that! Just so much pain depression and all that goes with it! No one in our tiny town to talk to no Doc. to help!
Donna, I’m so sorry that you’re carrying such a heavy weight. It helps me if I have someone with me to do shopping or errands. Is there someone in your tiny town that you can ask to help you? Is there anyone that can clean your house for you? Or maybe do just one thing like vacuuming…. Maybe you could call a time out for an hour or two so you can relax and rest. Care taking is exhausting for healthy people. You are lucky if you can even move your pinky finger!
Prayers and hugs,
Darlene
I’ve had fibromyalgia most of my life. Now at age 72 I still have it,I work full time and I live alone. It’s exhausting. I do have a friend that calls me frequently. He can detect subtle changes in my voice and he knows what each change means. He’s amazing. And he understands. And he encourages me. Having fibromyalgia is enough for one person to manage but I also have several other health issues that cause pain and affect my energy level, etc.
I want to tell you how sorry I am for you Darlene, but I can’t help but feel encouraged and inspired by you. We at Fibro News Today hope that you continue to be strong, be an inspiration to those you meet and gain strength each day to deal with the pain and, at times, the helplessness of this disease.
I have been suffering with the disease for about 10yrs now. I am now 55yrs old and it has gradually gotten worse as the years go by. You deal with it the best way you can, only you know what your body is capable of each day. Some days are good and some are really bad, but life does go on. My daughter has recently been diagnosed with FM as well and we are there for each other, understanding and support is what helps you get through. You can’t explain to people the pain you are in, my husband doesn’t fully understand though he tries. Its easier to just say your not feeling well. My heart goes out to all you sufferers out there, hopefully one day soon there will be a breakthrough! Till then take care and keep on moving!
Support is one of the most important ways that people with FM can deal with the pain and the pressures with the illness. People who do not have it see it as not that big of a deal. They simply can’t understand. We (FibroNewsToday) are glad to hear your husband tries to understand your pain and limited abilities. As time goes on, we are sure his understanding will increase. We wish you and your daughter all the best. Stay strong and support each other.