10 Things to NEVER Say to Fibro Warriors

10 Things to NEVER Say to Fibromyalgia Warriors

Millions of people are diagnosed with chronic illnesses, but they don’t look sick.  Most of them do not have visible clues to let the people around them know that they are not well.  People with a physical manifestation of their illnesses tend to gain some support and kindness.  For instance, people who have lost hair from chemotherapy or who require a wheelchair for transportation are highly unlikely to be told their problem is psychological and to simply get over it.

Fibromyalgia affects each of us diagnosed differently, but most of us have good days and bad days.  I have days when I hobble (the pain is more visible then) and I have days when I look totally fine, but have just gotten lost going to the grocery store because the fogginess in my brain is so bad that I cannot conjure up how to get where I was trying to go.

Fibromyalgia is NOT the only “invisible” illness; it is simply the one that I live with.  A broad range of conditions, diseases, and illnesses make up the plethora of “invisible” illnesses including Chronic Fatigue Syndrome, heart disease, diabetes, autoimmune disorders, dementia, mental illnesses, and cancer.  By my definition, an “invisible” illness is any health issue that is not easily visible to others, but has a major impact upon the lifestyle of the person living with it.

There are other lists of things people shouldn’t say to people suffering from an “invisible” illness. This list is a reflection of the not so helpful things I personally have been told by colleagues, friends, family and even doctors.  Some of the things on my list will probably be similar to other lists, simply because those of us with Fibromyalgia face many of the same issues.

The difficult part of writing this list for me was recognizing that some of the most hurtful things came from the people I love, people who genuinely think they are being helpful, but because they do not truly understand Fibromyalgia the over simplified statements regarding how to “fix” my condition or be healthier end up being hurtful. 

Each and every one of the ten items on my list have hurt me, in part because they help to create the frustration I face daily, but also because it leaves me feeling misunderstood and isolated from the people I love.

This list consists of these statements and a basic explanation of why they are not helpful for me in direct relation to Fibromyalgia.  However, I have no doubt that people with other “invisible” illnesses have also faced similar statements and can be helped by this list as well. 

For those who have loved ones suffering from an “invisible” illness and recognize statements they have made in the past on this list, please recognize that a simple apology or a change in how you approach your loved one can make all the difference in the world. Also, you need to know that people who love and care about one another are able to forgive each other and genuinely want to understand each other’s perspectives.   

For your loved one, the things you say and do may well create the difference between feeling alone and feeling supported.  People with good support systems ALWAYS have a better chance.

In order, from the least damaging to the most damaging in my opinion, here is my list of top ten things to NEVER say:

#10:  My friend had Fibromyalgia and it went away.

I wish that were truly the case. I wish that I could wake up one morning and Fibromyalgia simply went away forever, but that really isn’t how it works.  I don’t know your friend, so I don’t know why it looks like Fibromyalgia “went away” or even why they may have said it.  I can imagine a few scenarios:

1. Perhaps they are in a remission of symptoms and are able to function normally.  ---The good news with Fibromyalgia is that many people can achieve some level of normalcy if they learn their body’s limits, exercise carefully, and develop the right medical regimen.  But this often only lasts for limited times, I have yet to see any of my friends fully recover, but I have seen improvements for months even years sometimes.
2. Perhaps they have found the right combo of medicine and exercise and are “virtually” Fibro free.  --I have had times like this.  Over the years, you learn what works for your body and you do your best to maintain it, but after awhile side effects of medicine can become a problem or stress may increase exponentially in your life or the pain medicines may stop working and you are faced with either increasing the prescription or changing to something even stronger.  There are so many variables to finding the “right” regimen for you and things change.  
3. Perhaps your friend no longer wishes to talk about it, so pretends everything is okay when talking with you. –Deep down, this is how I feel about talking about my condition with you after you said this.  I will definitely be monitoring the things I say to you very carefully now.
4. Maybe your friend was misdiagnosed. Although this is exceptionally rare and highly unlikely, it is a possibility.—I hate to even add this on, because it is part of the reason Fibromyalgia is so widely misunderstood, but the truth is doctors are human and sometimes they make mistakes or gain new information, leading them to revise their original diagnosis. 

However, the statement that Fibromyalgia just went away is not helpful to anyone, including your friend who it “went away” for.  It insinuates that one person got all better; therefore there is something wrong with how you (and everyone else who has it and is not all better) are handling it or treating it, because you should be all better also. 

Although your friend may seem all better right now, the truth is at some point he or she will probably face the symptoms again and really doesn’t need the pressure of living up to Fibromyalgia having just gone away at one point, because it doesn’t go completely away yet-someday I believe there will be a cure.  But there is no cure YET!

#9: Aches and pains are just part of getting older

Many people as they get older do have more aches and pains, associated with arthritis and other illnesses.  However, telling me that the aches and pains are normal when I am in my twenties and thirties is absurd. 

I am in my thirties now and I have some minor arthritis, but it is nothing compared to the full body overwhelming debilitating pain I feel from the Fibromyalgia some days.  I don’t know anyone who as they got older could no longer hold hands on a regular basis, because it sent pain waves over their entire body.  

Many people with Fibromyalgia can no longer do little things on a regular basis that shouldn’t hurt at all, no matter how old you are.  For instance, a hug should not bring tears to your eyes from the excruciating pain.

Additionally, most people are diagnosed with Fibromyalgia long before they are old enough to be experiencing age related aches and pains.

#8: You are just depressed.

This is a statement that is incredibly cruel and discouraging and probably shouldn’t be told to anyone. Depression is a serious debilitating illness. People with depression need love and support.  They do not need to be told that they are “just” depressed. This statement negates the very real and serious effects of depression. 

For me with Fibromyalgia, I have taken anti-depressants as part of the course of medication to treat Fibromyalgia, but I have never been diagnosed with depression.  I try to maintain a positive attitude, but I also know that this can change.  Many people with Fibromyalgia do have a diagnosis of a depression, because dealing with chronic pain for months and years will eventually wear down anyone.

Depression is a very serious condition and I feel that no one should lightly diagnose anyone as being “just” depressed. In this vein, I believe depression is another widely misunderstood illness.  Although, depression can certainly play a part with Fibromyalgia, depression is NOT the same as Fibromyalgia.

#7: I heard that doctors say Fibromyalgia isn’t real.

Another variation of this is I hear frequently is that doctors just diagnosis Fibromyalgia to everyone when they are unable to figure out what is wrong.

In the past, many doctors did not believe in Fibromyalgia, but the awareness and understanding of Fibromyalgia has improved a great deal.  Today, most doctors recognize that Fibromyalgia exists.  Research has shown clearly that Fibromyalgia is real. 

However, diagnosing Fibromyalgia is very difficult.  A diagnosis requires eliminating all other illnesses and diseases that could be potentially causing the pain. If all other possibilities are eliminated, then someone may be tested with a trigger or tender point test, in which 11 of the 18 points must be tender to the touch for many months.

A diagnosis of Fibromyalgia is tricky and should not be treated lightly.  In my opinion, any doctor who actually says they just diagnose it when they can’t figure out what is wrong or says Fibromyalgia is NOT real should not be practicing medicine, because they do not care enough about their patients to try to understand an increasingly common malaise. 

#6: Someone else I know is in worse shape than you are.

The insinuation here is that, because other people are in worse shape than me, then I should simply be able to handle my pain better.  The difficulty here is that it is impossible for any of us to know who is really in better shape than someone else.  Many of us with Fibromyalgia put a mask on when we go out and do our best to put our best face forward to the world at large, but that doesn’t mean we aren’t going home afterwards facing excruciating pain.

Comparisons to the condition of other people, better or worse, aren’t really very helpful as a whole.  I personally have been inspired by seeing some of my friends cope really well and find what works for them, because it gives me hope that I can improve even more as well.  But that doesn’t mean comparing myself to them is productive.

The severity of Fibromyalgia symptoms varies from person to person and day to day.  It is impossible to lump everyone with Fibromyalgia or any other illnesses into one group and then productively compare them.  This comparative statement really insinuates that you are somehow doing something wrong or are pretending that things are worse for you than they really are, because someone else is in “worse” shape than you, but handling things better.

#5: Have you tried the latest product name that cures Fibromyalgia?

Currently, there is no CURE for Fibromyalgia, so if the product claims that, then I’m not interested.  I know that people who say this mean well and simply want to make sure that I am up to date on the most recent medications or supplements that may be beneficial for me.

Usually, when people say this, they are talking about a product that is being heavily marketed that falls into the “natural” supplement arena.  There are literally dozens of products that claim to cure Fibromyalgia.  There are hundreds of products that claim to give you extreme weight loss also.  Unfortunately, just because the product claims that you will get extreme weight loss or cure Fibromyalgia in their marketing it doesn’t mean it really works.

While some products may help with the symptoms, they tend to be expensive and tend to have varying results.  I am not capable of trying every supplement that makes the claims, nor am I willing to.  With Fibromyalgia, I have found that different things work.  Ultimately, the best combination for me seems to be medication, vitamins, light exercise, stress reduction and improved sleep habits.  

I do believe some supplements can genuinely help, but I am not willing to be a guinea pig, simply because the marketers have targeted the Fibromyalgia patient segment.

If someone with Fibromyalgia drops their current regimen to try the newest cure constantly, then they will most likely face some issues.  If there was a cure, every doctor in the world would be prescribing it to the millions of people with Fibromyalgia and who ever developed the cure would be a multi-billionaire.

#4: You just need more exercise

This translates to meaning you are lazy.  Truthfully, I think it is probably safe to say that most people need to exercise more whether they have Fibromyalgia or not.  Am I saying that everyone is lazy? No, I am saying that the pressures and demands of today’s society make it very difficult for anyone to find the time and energy to exercise.

For people with Fibromyalgia, more exercise is even more difficult to follow, because of the issues inherent with exercising with the condition. Exercise has to be approached carefully, because if you overdo things you run the very real risk of causing a flare-up that is highly likely to render you incapable of doing anything. 

Exercise is an extremely important component of treating Fibromyalgia.  We must exercise a little each day.  Exercise for us should start being in small increments with very little physical impact.  I would suggest light yoga for five minutes or walking, while you work your way up to longer workouts.

If you decide to run for a mile with Fibromyalgia, but haven’t taken the time to build up the strength and stamina then you will most likely have a flare-up.   Let’s be honest, if the average forty year old who hadn’t been exercising suddenly decided to run a mile, they would probably have some repercussions too.

I do know people with Fibromyalgia who can exercise three times a week for an hour doing aerobics, but this has taken them a long time (years) to build the stamina and strength to do this, and won’t necessarily work for everyone with Fibromyalgia.  They also still have days, when they aren’t able to do this. 

The statement “you just need more exercise” is another over-simplification.  You are right we need more exercise, but with Fibromyalgia it is not the only thing that is needed.  We also need medication, stress reduction, better sleep, and a good support system.

#3: I know exactly how you feel

This one is tricky. When I am with a friend who also has Fibromyalgia and says this, I feel supported, validated and understood. But when someone who does not have Fibromyalgia says this, I feel very frustrated and misunderstood.

Part of the problem with this statement is that it is usually followed with a personal story; like I’ve been feeling incredibly tired lately too or when I broke my neck it felt like that.  Well, the pain of breaking your neck probably was similar, but it is not the same. Simply being tired is not even in the same stratosphere as the fatigue from Fibromyalgia.

This statement shows a basic misunderstanding of the severity of Fibromyalgia pain and fatigue. It’s an all-encompassing life draining pain and exhaustion that lasts for months or years or never ends at all. 

However, I do appreciate that the people who tend to say this are simply trying to understand and make a connection. As a result, I tend to not express myself as much in response and just let them believe that it is similar.  My inability to find away to respond to this appropriately is a large part of why it is so high up on my list

#2: You don’t look sick

This is an impossible comment to deal with.  On one hand, I’m glad that I don’t look sick to you, but on the other hand, no one recognizes that I am sick. 

If we allow ourselves to be totally open and honest about how we are feeling all of the time and do not take the time to fix ourselves up, then we end up alienating people. No one wants to be around someone who is unable to do or be anything but their illness. As a result, we all try to put our best foot forward when we go out and this adds to the confusion of not looking sick.

One time someone who doesn’t know me very well said it and one of my friends told them I may not look sick, but if they are actually looking at me especially in my eyes they will see the pain.

We may not have a wheelchair or a runny nose or a deformity, but we do have a serious illness and if you really look into our eyes ignoring the outer shell, you will be able to see it.

#1:  It’s all in your head

This is the most annoying, cruel, horrifically insulting statement you can make to someone with Fibromyalgia or any “invisible” illness.  This statement is used to describe someone who has thoughts that are disconnected from reality and is commonly used by people to describe hypochondria.

Hypochondriacs are people who think they have a medical condition, but don’t actually have it. Fibromyalgia, on the other hand, is a real physical illness that is diagnosed by a doctor or in many cases a team of doctors and specialists. 

There seems to be a growing thought that all illnesses are controlled by your brain and therefore “it’s all in your head.”  The thought here seems to be that if you are able to control your mind, you would be able to control all illnesses.  It’s an interesting thought, but I haven’t seen anyone defeat cancer or Fibromyalgia simply by using their mind.  Although, I do admit attitude has a lot to do with how you cope and survive, the issue is more complicated than this.

Regardless of the intent, this statement has historically referred to people who have thoughts that are disconnected from reality.  This statement is condescending, rude, and shows a blatant lack of respect or kindness towards the person you are saying it to.  As a result, I consider this to be the worst thing anyone can say to a Fibromite.

Thank you for reading my list!