Written by: Christine Lutley, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
You are sick and tired of being sick and tired and wish people understood what it is like to feel so miserable, much or most of the time. You wish we had the energy to explain it over and over. You wish we never had to state the symptoms with “I am,” like “I am in pain.” “I am exhausted.” “I am sick.” “I just can’t.” All these statements make you feel like you are this illness, and you are not. So, I made you cheat sheets to give or send to those who want to know more about fibromyalgia and how it affects you.
You wish you could feel like yourself again. You wish someone understood, but no one seems to, and you keep disappointing more people. You love and appreciate the people around you and you are sorry that sometimes you don't show it because of this chronic illness.
These are the facts of life with fibromyalgia.
You look fine, but you are not. You have an invisible chronic illness that has many symptoms, including chronic pain and fatigue, and generally feeling sick.
Your illness is not contagious, and no one is in danger of getting it from you. Others are safe.
You are often in severe pain. It rarely happens that you are in no pain, and it doesn’t last.
You are sometimes too tired to think straight, let alone do anything, and you need to rest and sleep.
You get brain fog and forget things and lose things, and it is part of the illness.
You are under constant stress from this chronic illness and the stress affects your moods, from happy to sad, to depressed & anxious, and sometimes it makes you very irritable.
Your pain and symptoms frequently change, with different kinds of pain in different places on different days, or at different times on the same day. Every day is a surprise, but not in a good way.
Medicine and doctors can’t cure fibromyalgia.
You have been told there is no cure. You have been told you have to learn to live with this. You hate that. You want to get better now. The longer you have had this, the less likely it is that you believe you will get well.
You hate that no one seems to know the cause and that, therefore, there is no effective treatment.
All you can get from doctors is a treatment for individual symptoms, to hide the symptoms, not to solve the root problem(s).
Even worse, some doctors don’t seem to understand fibromyalgia at all, and some don’t believe it is real. That is very difficult to deal with.
The only good news is that you can be coached to heal yourself of underlying conditions and to make changes to cause your wellness. Unfortunately, this good news gets lost in all the bad news. How do I know? I know because I healed myself and I help others to do the same with training and coaching. We must take responsibility for our own wellness. But, it is possible to get well. There is hope.
You hate the effects of fibromyalgia.
You hate that you don’t know when it will suddenly, without warning, get a little better, or much worse.
You feel like you are a mess. Sometimes, you are unable to deal with life very well. It has nothing to do with anyone else and it makes you very sorry and unhappy.
Your coping skills are sometimes not good when you feel terrible.
You have no control over how much your symptoms keep changing and you wish you did.
You are sorry that you snap at people or sound grumpy sometimes. You don’t mean to, and you hope others understand that and don’t blame you. You worry that this “you” is not good enough for others, and so your relationships suffer.
You cannot do some things yourself sometimes, so you need help. You hate to have to ask someone to change their routine to help you when you are feeling very unwell. If you could avoid that, you would.
Your appreciation and affection don’t change when you feel terrible.
It is no one’s fault you have this illness, no one else’s, and not yours. But, you do try to take responsibility for it.
You want others to understand.
You are chronically sorry for being a disappointment. You wish you could fix your relationships with all the people you now seem to disappoint.
You want to apologize in advance, for the times in the future when you are not coping well, can’t be social, can’t do things you usually do, and need help.
Your illness doesn’t change your love, care, compassion, dedication, and commitment; but you can’t show it sometimes, especially after being a disappointment, yet again. You appreciate it when someone understands this and understands how you feel.
You get why they don’t understand. You didn’t understand it either until you were living it. You do try to take care of yourself and you will try to get better.
Let others ask you questions. Suggest that if they want more information to use reputable sites like the Mayo Clinic and John Hopkins University.
I wrote cheat sheets to make it much easier for you to explain your illness. Feel free to download and print them. LINK If you want to personalize them for your use, you may if you keep please note that are copyrighted and keep my information in the footer as “inspired by Christine Lutley, FibroCoach.Online” so others who get a copy also can see the source and be able to seek my help if they want it. One of the sheets is for your loved ones. One is for other adults. The other is for your explaining to kids (or grandkids, nieces and nephews, etc.).
Relationships and Fibromyalgia
Relationships are one of the areas outside of their health that women with fibromyalgia report the most difficulty dealing with. Many people complain that no one understands them.
We, humans, are hard-wired to react automatically for safety, so when any two people are interacting, both have that same hardwiring. If the situation feels threatening to either, one is likely to react. Life is smoother when we learn to respond instead of reacting. Give yourself a break and remember that we often react in relationships because of the effects of our illness.
When one of two people has fibromyalgia, there is usually a huge gap in understanding between them about that person’s condition and needs. It is not possible for the person without fibromyalgia to understand what you are going through, unless you communicate it to them, so they can and do understand. Telling them once isn’t enough. As you know, there is a lot to take in and they don’t have the built-in reminders of pain and fatigue that you do.
Communication is not successful until the person you are talking to understands. Your responsibility isn’t over until you have explained it adequately.
It is always our responsibility to help them understand something as foreign to them as the chronic pain and fatigue of fibromyalgia, especially when you are a bit of an expert on having fibro. Remember, you didn’t know all about fibro until it happened to you. Don’t expect others to understand what you understand only because you must. This is not a part of their life experience. It is your life experience. It is not unreasonable if they don’t get it. Is it reasonable of you to expect them to?
Cheat Sheet 1: for my Loved Ones, Friends, & Family Members
What I want you to know about fibromyalgia, its effects on me, & maybe you.
I love you and apologize that sometimes I don’t show it because of my illness.
I have fibromyalgia, a chronic illness. You may research fibromyalgia on reputable sites like the Mayo Clinic and John Hopkins University. I’d really appreciate your asking me questions about it when I am having a good day. You can likely sense when I am having a bad day.
No. You can’t catch it. You are safe.
I look fine, but I am not. I have an invisible condition with many symptoms, including chronic and often severe pain, chronic fatigue, and generally feeling sick.
I hate that I don’t know when it will suddenly, without warning, get a little better, or much worse.
My pain and symptoms often change with different symptoms, including different kinds of pain in different places on different days. Sometimes it aches, stabs, burns, itches, or cramps. Every day is a surprise, but not in a good way. I cannot control this.
Sometimes the pain is severe. Sometimes I am too tired to think straight, let alone do anything, and I need to rest and sleep.
I get brain fog. I forget things and lose things, and it is part of the illness.
I am under constant stress from this chronic illness. The stress changes my mood from happy to sad, to depressed & anxious, and sometimes it makes me very irritable. I am sorry.
I am a mess, sometimes a terrible mess, and I can’t deal with life very well. It has nothing to do with you. I love you and I am sorry.
My coping skills are good when I feel terrible. I am sorry for that, but sometimes I really can't help it.
I am very sorry if I snap at you, or sound grumpy sometimes. I do not mean it to be directed at you. It is not your fault. It isn’t my fault either. I wish I could scream and let it out.
Sometimes, I can’t do things myself and I need your help. I am sorry. I know it is hard to have to change your routine. If I could prevent it, I would.
I love you so very much and my love doesn’t change when I feel terrible. My coping changes. It is no one’s fault, certainly not yours, and not mine.
I am sorry, in advance, for the times in the future when I am not coping well, can’t be social, can’t do things I usually do, can’t do the things we usually do together, and when I need your help.
I love you. My illness doesn’t change my love for you. I am very sorry I don’t always show it.
The doctors say there is no cure and I must live with it.
This coach thinks I can learn to heal myself. I don’t know.
I do take care of myself and I will try to get better.
Thank you for your understanding and support.
Cheat Sheet 2 for Adults:
What I want you to know about fibromyalgia, its effects on me, & maybe you.
I respect you and I am sorry if sometimes you feel I don’t show it, or that I take advantage because of my illness. I do not take advantage; but, sometimes I do have limitations. This condition is disabling in many cases.
I have fibromyalgia, a chronic illness. You may research fibromyalgia on reputable sites like the Mayo Clinic and John Hopkins University. I’d really appreciate your asking me questions about it when I am having a good day. It is too hard on a bad day.
No. You can’t catch it. You are safe.
I look fine, but I am not. This is an invisible condition with many symptoms, including chronic and often severe pain, chronic fatigue, and generally feeling sick.
I don’t know when it will suddenly, without warning, get a little better, or much worse.
My pain and symptoms often change with different symptoms, including different kinds of pain in different places on different days, or throughout the day. Sometimes it aches, or burns, or itches, or cramps. Every day is a surprise, but not in a good way. I cannot control this.
Sometimes by the end of the day, I am too tired to think straight, let alone do anything, and in severe pain. I need to rest and sleep. Being social is often not an option.
Sometimes I forget things and lose things, and it is part of the illness.
I am under daily stress from this chronic illness. S tress changes my mood from happy to sad, to depressed & anxious, and sometimes it makes me very irritable. I am sorry.
My coping skills aren’t as good when I feel awful. I do my best.
I am sorry if I snap at you, or sound grumpy sometimes. I do not mean it and it is not your fault. It is no one’s fault.
Sometimes, I just cannot do things by myself, so I need help. I am sorry for any change to your routine, or our plans when I am feeling very unwell. If I could prevent it, I would.
I respect you even when I feel terrible. My coping changes. It is no one’s fault, certainly not yours, and not mine.
I am sorry, in advance, for the times in the future when I don’t cope well, can’t be social, can’t do things I usually do, and need your help.
My illness doesn’t change my affection or respect for you. I am sorry it doesn’t always show.
The doctors say there is no cure, and I must live with it.
This coach thinks I can learn to heal myself. I don’t know.
I do take care of myself, and I will try to get better.
Thank you for your understanding and support.
Cheat Sheet 3 For children
What I want you to know about my illness that makes me sore and tired, and how that might affect you:
It is called fibromyalgia, or fibro, for short. It hurts like heck and makes me so tired.
No. You can’t catch it. You are safe.
I love you. I’m sorry if sometimes it might feel like I am mad at you. That isn’t it. I feel sick. You know how it feels when you fall and hurt yourself, or when you are over-tired, or get a sick tummy, or a bad cold? You just feel awful, right? I feel sick and sore and tired like that, a lot. You may ask me any questions you want about it.
I look fine, but I am not. The illness is invisible. It has lots of ways to make me feel sick, especially pain, tiredness, and feeling yucky. No, I am not dying. It isn’t that kind of sickness.
It can hurt in different parts of me.
Sometimes the pain is very bad, and I want to cry.
Sometimes I am very tired because of it and need to rest or sleep.
Sometimes, I feel like I have a cold, or flu.
I hate that I don’t know when it will suddenly get a little better or much worse. I have no control over that. I wish I did.
I hate that it changes a lot, hurts in different places and every day is a surprise, but usually not a good one.
I am sometimes too tired to think or do anything, and I need to rest and sleep.
I sometimes forget things and lose things because of this illness.
It stresses me and my moods change from happy to sad, to depressed, to anxious, and sometimes irritable, or mad. It is not your fault or anyone’s. It is fibromyalgia.
I am a mess sometimes and can’t deal with life very well. It has nothing to do with you. I am sorry.
I am sorry if I snap at you, or sound grumpy sometimes. I don’t mean it. It’s not your fault and I know that.
Sometimes, I am too sick to do things myself, so I need help. I am sorry for that. I can’t help it.
I love you very much and my love doesn’t change when I feel terrible. How I feel and act changes. That is no one’s fault, not mine, and not yours.
I am sorry, in advance, for the times I feel yucky, can’t play, can’t take care of you, can’t do things I usually do, and need your help.
I love you. Being sick doesn’t change my love for you, just like you still love me when you are sick. I am sorry for not always being able to show you how much I love you...
I wish you could kiss it better.
I promise to take care of myself.
I love you. Thank you for loving me, for trying to understand my illness, and for helping me. me.
But There is Good News
The good news is that you can be coached to heal yourself of underlying conditions and to make changes to cause your wellness. Unfortunately, this good news gets lost in all the bad news and controversy about having the illness. How do I know? I know because I healed myself and I help others to do the same with training and coaching. We must take responsibility for our own wellness and especially when there is no cure. It is possible to feel better and it is possible to get well. To get well, we need to make changes physically, mentally, emotionally, energetically, and spiritually. I have and I help others to do the same. There is hope. I’d be happy to help you to heal with my coaching and training. In the meantime, you need to cope with the practicalities of having it and I can help with that, too. You can download a copy of any or all of the cheatsheets in this article from the call to action below.
Call to Action: Download your own free cheat sheets to explain fibomyalgia to others.
Signup for this free resource “CheatSheets for What You Wish People Understood About Fibromyalgia” by Christine Lutley in Brainz Magazine
CLICK HERE.
Once you sign up, you will get a thank you page that includes a download link to a folder with 8 files. You can immediately download a pdf or google document version of all the cheatsheets in one of two files, or to select any one of them in either format (6 options).
Please use this link yourself only. Refer others to sign up to receive the free gift from me.
You may print the cheat sheets and share them.
You may refer others to the Brainz article and they can signup to download them.
There are links to my website and social media under my articles.
may edit the cheat sheets to personalize them for yourself. I ask only that you do not remove the header information, so all readers have my contact information, in case they want to contact me.
This signup link will also sign you up for our email list so you can receive informative and educational emails, an invitation to join our private Facebook Group, and an invitation to our free online events. You may, of course, unsubscribe from the mailing list at any time, but I hope you won’t.
Christine Lutley, Executive Contributor Brainz Magazine
The doctors diagnosed Christine with incurable fibromyalgia. Accepting that & their medications, she was work-disabled for 20 years. She became interested in spirituality & healing. 20 years later, on her 65th birthday, having witnessed her mother’s suffering & death with dementia, she decided she must create a new life while she still could. She focused on what she most wanted & used a spiritual 4-body healing approach. She not only healed herself but created a repeatable process to help others heal themselves, called Fibro Freedom Formula: You Healing You. Get supportive advice and learn from one who has walked in your shoes, so you can learn and be coached in peace, without any anyone telling you that you are making this up, or that fibromyalgia is incurable. The last thing you need is to be misunderstood because of this invisible illness.
