How to Speak to Loved Ones about Fibromyalgia

Having Fibromyalgia can be extremely tough, but what can seem worse is having to communicate with your family about it.

Because Fibromyalgia is still such an enigma, relating the ins and outs of your condition to your loved ones can be a real chore.

However, it is extremely vital that you gain the support of your family and friends. It will reduce your stress levels and you may also require their patience or assistance when you are very sick. Here are a few helpful hints on how to break the news to your family about Fibromyalgia.

Expect the Worst

When you first initiate the conversation with your family and friends about Fibromyalgia, expect the worst.

Your mother may cry, your father will tell you to get a second opinion, your best friend will tell you that you’ll get over it, and your brother will look at you blankly and say “what is that?” That’s okay. Once they get over the shock, they will be on the same page with you.

The worst thing you can do is think that your family and friends are going to support you from the first moment you tell them.

Unfortunately, people don’t function that way. These people love you, and they hope the best for you.

When you tell them something might be wrong, you are giving them quite a shock. Fibromyalgia is not a commonly known condition.

When your family members hear the term for the first time, they may automatically think the worst.

One friend of mine told her parents “Mom, Dad…I have Fibromyalgia and I am not going to die”. She felt by immediately alleviating their worst fears, the conversation would go better.

Realize that each person is different in how they react to news. You may need to let one person marinate for a few days on the fact that you have a condition, while another individual may immediately launch into twenty questions and want details and answers.

Best practice is to make a list of all the people you feel need to know about your condition and write down how you think they will react.

Write down how you can help counteract their reaction and make the conversation positive and effective.

You may also consider the environment in which you tell them. Will it be better if I tell them in person, or is it better I give them a call?

The temptation may be to send out a mass email to your family and friends or post it on Facebook, but this will actually cause greater worry and anxiety among your loved ones. The best approach is to make your news personalized for each individual.

You will also want to consider the level of information you initially provide your family.

Your husband may need to know every little detail because he will be a witness and supporter on a daily basis, where mom and dad may only need a high level overview.

Sometimes too much information is unnecessary and causes undue stress, and the opposite can also be true.

When making your list, write down the level of detail you think you should initially go into with each loved one and determine what would be appropriate.

You will generally want to stick to the facts (symptoms, medicines, appointments) and try to avoid any theoretical ideas or hypothesis you and your doctor may be throwing around. Your initial conversation should be pinpointed and tailored for the listener.

Vocabulary

I find it significantly helpful to go through some of the common vocabulary that is part of Fibromyalgia, and you may go as far as printing up a sheet for your family that defines each of the words.

Explain to them what Fibromyalgia literally means (“muscle and connective tissue pain” in Greek).

You may also explain words like allodynia, cognitive dysfunction, neurobiological disorder, and somatic syndrome. Depending on your symptoms, you may want to define words that are closely related to your symptoms like myofacial pain, myoclonic twitches, irritable bowel syndrome, or temporomandibular joint dysfunction.

The more your family knows about the different meanings of your symptoms and the condition, the easier it will be to converse with them on the subject. Nothing is more frustrating than trying to understand what a loved one is saying and it sounds like they are speaking in a different language.

Another part of learning the vocabulary and understanding your condition is to provide reliable resources for your family to peruse.

You may refer them to this website, or a medical website that explains your condition. You may want to buy them a book.

One of my friends bought their mother The Fibromyalgia Cookbook: More than 140 Easy and Delicious Recipes to Fight Chronic Fatigue by Shelley Ann Smith so her mother could not only have fun cooking some new recipes, but simultaneously learn about her condition.

Another friend of mine bought her husband Living with Fibromyalgia Patients: 79 Ways to Make their Life Betterby Tom Buford for his Kindle so he could better understand some of the life changes they would need to make while he was commuting into work on the train.

You may find that your doctor has pamphlets that help explain the condition to loved ones.

Providing good resources will help your family understand your condition without being inundated with misinformation. It will also give you a nice tool to open discussion with your family.

Symptoms

Describing your symptoms seems like an easy job, but don’t be surprised if you see your father wincing and your mother feeling guilty.

Even though you are describing your symptoms and the way you react to certain stimuli, people tend to take it personally.

When you tell your parents that you are extremely sensitive to cold air, your father may give your mother the “I told you so” look that she shouldn’t have been turning up the air-conditioning so high all summer.

The fact of the matter is what you perceive is not what everybody else perceives because, guess what, you have Fibromyalgia.

I find it better if you can take the “I” or “me” out of your symptom descriptions which helps them sound less personal.

For example, “my nervous system” is extremely sensitive to cold, or “my brain” thinks I am on fire when I get touched on my arm.

This reiterates that you have a condition that is out of your control, and your senses are at the mercy of an imbalance of chemicals in your body and a nervous system that has gone haywire.

Be as specific about your symptoms as you feel appropriate. There is no sense in beating around the bush when every time you are hugged you feel like you are being stabbed.

Your loved ones do not want to cause you pain, and as hard as it may be for them, it is better if they also know how to not continue to hurt you.

One of my friends had an Eskimo kiss policy with her family so that they could still express affection without hurting her.

You may want to tell your loved ones where your areas of sensitivity are, or what conditions aggravate you the most and provide alternatives on how they can create a better environment for you.

You may also have to deal with misinformed relatives. Because of the mysteries that still surround Fibromyalgia, you may hear a relative snort or harrumph at your symptoms because they may still be under the impression that Fibromyalgia is psychosomatic, or under your control.

For these types of relatives, it is important to stress what your doctor says, what findings they have found from tests, and what other things they have ruled out and why.

Don’t assume that you are going to change your relatives mind overnight, and you should also not feel that this is your responsibility.

You have a condition, you chose to inform them, and you don’t need to explain yourself any further than that if you don’t want to.

Medication and Therapy

It is very likely that you will have a combination of medicinal, therapeutic and dietary changes to battle your Fibromyalgia.

It is also very likely that you will have to change any one of these methods because it is not working or is having bad side effects.

Medication can be difficult to explain to relatives because anything you will be trying will be intended for another condition.

For example, if you tell them you have to take an anti-depressant or an anti-seizure medicine, be ready to explain why you have to try them, what symptoms it may alleviate, and what side effects may occur.

Fibromyalgia is so different than other conditions in that there is no magic concoction of medicines that are going to make things better, unlike cancer, pneumonia or even AIDS.

Some family members may share your frustration when a particular combination of medicines and therapies don’t work.

The important thing is to keep positive for both yourself and your family. I like to conscript my loved ones into helping me determine good methods for me.

I will let them know when I am changing something in my diet or trying a new medicine, and then ask them if they see anything different about me.

You may get your friends to join a Yoga class with you and ask them if they notice better movement each week.

The nice thing about putting your relatives and friends on observation duty is they can often notice things that you don’t.

Another important factor is to make sure you share with your relatives when something is working.

It will reduce their anxiety as well as yours, and create bigger supporters out of your family. Sometimes when we are in constant pain, our natural reaction is to express the negatives about our condition out of frustration.

It’s okay to do this on occasion, but it is much better suited for your therapist. Be sure to thank your loved ones if they helped in observing your condition, or cooked a different meal that was Fibromyalgia friendly, or warmed up the pool before you went swimming. Your family will enjoy knowing they were a part of the therapy that makes you feel better.

The Stress Factor

If you thought explaining your condition, your symptoms and your medicines was going to be difficult, wait until you have to explain to your family about stress.

Stress is a huge contributor to your pain levels. The more stress you are under, the more likely it is you will have bad episodes.

It has also been shown in many studies that a majority of Fibromyalgia patients have suffered from Post-Traumatic Stress Syndrome from early childhood, usually through a family incident such as divorce, molestation, neglect, etc.

Therefore, it is very likely that your family today may cause you some sort of discomfort.

It is important that your family understand that stress takes a huge toll on your physical well-being, and you need to avoid intense situations as much as possible.

Unfortunately, tension can reign in some families and you will have to determine how involved in your family you can be knowing this.

On the other hand, you also don’t want everyone to walk on eggshells around you. I highly suggest doing activities that promote togetherness, and avoid the pain points your family suffers from.

If having tea with your mother by herself is less demanding than seeing your family as a whole, you may want to visit family members individually and avoid group gatherings.

If your friends always seems to get in a fight when you go on a trip, then try to do more activities where you stay at home. If a conversation about politics always ends in hurt feelings and tempers flaring, try to avoid this topic.

You may want to forewarn your family and friends ahead of time that if you feel the situation is stressing you out, you may quietly walk out of the room or leave without saying goodbye.

Explain that it is not because you don’t love them, you just need to be a little selfish about your health because stress can physically hurt you.

If you think your family is open to it, you may try taking communication classes together, seeing a family therapist, visiting your priest, going on vacation together or whatever you think will help you communicate better and handle tense situations more efficiently.

You also need to make yourself stronger in handling and avoiding nerve-racking situations. A therapist is usually a good third party that can help you understand and become better at dealing with hectic times.

Once you empower yourself to make good decisions in this area, you will find that you end up in less stressful situations and don’t get as affected by your circumstances, and therefore don’t flare up your Fibromyalgia symptoms.

Be Open

Communication is a vital tool when you have any difficulty or hurdle in your life, and it is especially important that you keep the lines of communication open with your family and friends. Try to be open to their ideas, fears and questions.

Don’t treat any observation or question as stupid or unimportant. Having a discussion about their concerns can bring you closer to together, as well as providing vital stress relief for both of you.

Have patience when your brother accidentally pats you on the back, or your Aunt Edna brings you some crazy Mushroom concoction from Mexico or your mother makes you explain for the third time why you are so tired. It is okay.

They love you and are probably exhibiting some patience of their own with you. Try to stay positive, informative, and involved, and don’t shy away from allowing your family to become more involved with you.

Fibromyalgia patients have a tendency to suffer grievously from depression for a number of reasons, and getting out of the house for some well-spent family and friend time can be extremely healthy for you.

You may also discover some important information through continued family communication.

Many Fibromyalgia patients have genetic connections to this disease, as in a grandmother may have had rheumatic arthritis, or an aunt may have had lupus.

These diseases are all connected and could help you explain your own condition.

Last, but not least, don’t be afraid to ask for support. Our family and friends are our network to rely upon, and there are probably many times when you helped them out.

People who have established networks live better, fuller and healthier lives. It’s a fact. Be motivated to create a healthy relationship with your family and friends as a part of your Fibromyalgia therapy.