Relationship with someone with fibromyalgia

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Letting Your Partner Know about Your Fibromyalgia

Fibromyalgia is an illness that afflicts countless women in this country. If you are one of the afflicted ones, then you probably already know that it can be a trying condition.

In addition to being painful and frustrating, it is somewhat of a phantom illness. What this means is that the symptoms of fibromyalgia are more generalized and not apparent to an observer.

The question becomes for you: How should I explain this phantom illness to my loved ones?

I need them to be understanding of my condition, but the condition is somewhat intangible. It’s not like I can show them my problem, like with a broken arm.

What Exactly Is Fibromyalgia?

Fibromyalgia is an illness that afflicts about 10 million Americans. The vast majority of people with the illness are women.

There are no lab tests that can be used to diagnose the condition. It is diagnosed solely based on the report of symptoms by the patient.

The relevant symptoms are fatigue, tenderness, problems in functionality, and a lack of overall well-being.

Additional symptoms include:

– Sleep disturbances
– Cognitive issues
– Stiffness
– Depression
– Anxiety
– Headaches
– Pelvic pain
– Bladder issues
– IBS
– GERD

According to the National Fibromyalgia & Chronic Pain Association, there is no cure for the illness.

Since there is no cure for the illness, you will need to have a lengthy discussion with your loved ones about your condition. This is not something that is just going to go away.

Do You Have an Understanding Partner?

The first thing that is important with regard to talking about your FM with your partner is that they be understanding.

If you have a spouse or boyfriend who is not understanding, then no “little talk” with them is going to help.

Unfortunately, this is something that is a little beyond your control. However, there are things that you can do to help your partner become a little more understanding.

One strategy is the following: All of us have little handicaps in life that we are sensitive about.

Let us say that your boyfriend is a very shy person; They are so shy that it gets in the way of their everyday functioning.

The idea is not that you want to throw their handicap in their face and hurt them thereby.

What you want to do is to merely show them that they have issues that get in the way of their functioning in the same way that you do. This will make them a little more understanding of your plight.

You Need to Educate Your Partner

The assumption here is that you are not a medical expert. The most that you can do is tell your partner what your symptoms are.

However, it would be much better if you educate your partner on FM. The objective knowledge will convince him that FM is not just a psychosomatic illness that you dreamed up.

A helpful website with respect to educating your partner is In the Shadows of Fibromyalgia. This website contains an article that lays out what the illness is and how it affects those afflicted with it.

The idea is that, as a part of your “little talk,” you can have your partner read up on this website about your condition.

The fact that it is written by an authority in the area will convince him that you have a bona fide illness.

Take Your Partner with You to Your Doctor

Another way of reinforcing the idea that you suffer from a real illness is to take your partner along with you to the doctor for a consultation.

If you are particular about your confidentiality, then this will not be an option for you.

However, you should really consider if it is worth it to sacrifice some of your confidentiality for this purpose.

The truth is that you can tell both your doctor and your partner beforehand that you want to have control over what is discussed in your session. This way, anything that is truly private can still be kept confidential.

Not only can you consult with your doctor with your partner present, but also you can bring your partner to see your therapist.

The advantage of doing this is that your therapist can deal with any emotional issues that exist between the two of you.

Set Up Your Boundaries

Part of your “little talk” that you will have with your partner should be focused not only on their understanding of your condition.

You need to also set up exactly what kind of support you will need from him. This comes in two forms: There is emotional support and practical support.

With respect to the emotional support, you need to let your partner know that you may be emotionally compromised sometimes by your condition.

What this means is that your partner will need to step in to soothe you and make you feel better.

You should not make the assumption that he will automatically know what to do in the event that you are really suffering.

He needs to know how to tell that you are having an issue and exactly how to step into the situation.

This can be a challenge for many women. They want their partner to be able to pick up on the signs that come along with suffering from the condition.

However, many men need a little help in recognizing exactly when you are having your problem.

You need to let him know when you are suffering and when you need that emotional support.

With respect to the practical side of things, you need to have an arrangement with your partner that they will relieve you of some of your responsibilities when you are unable to discharge them due to FM.

This can mean taking care of more household chores or picking up the slack with respect to childcare.

Since you may not even be thinking very well when you are suffering from FM, you need to have your arrangement in place before you actually have a problem.

This way, there will be a smooth transition into how you deal with things when you are ill.

Your partner needs to understand that FM is a chronic illness. This means, of course, that you can do things to make your situation better, but it could be an issue for the rest of your life.

It is important to emphasize that you may not be in a functional condition mentally during the time that you are afflicted with FM.

Therefore, your partner has to be aware that they may need to make decisions for you in your absence, so to speak.

The best way to handle this is to make sure that you plan ahead. You need to think through all of the possible scenarios of things that could happen.

This way, your partner knows how to implement your decisions when you are not able to make them.

Tell Your Partner to Build His Own Support System

According to Everyday Health, it is really important for your partner to develop his own support system to help him deal with his own issues.

Your partner is going to need a sounding board to help him relate to what he is going through.

Many men like to go it alone. However, you need to gently inform him that he needs to develop his own support system.

You do not know how difficult your illness will be in the future, and you need to let him know that.

FM can be debilitating, and he might be left with a lot of responsibilities that he must carry out himself.

Also, you may not be in a condition to support him emotionally in the way that he needs to be.

Chronic illnesses have a way of sucking the energy out of a person. You may just not be in the condition to fully function in your relationship.

FM and the Sex Drive

Another important issue that you need to discuss with your partner has to do with your sex life.

You might develop an aversion to being touched and a low sex drive as a result of your FM. You need to discuss with your partner a way that you can signal to him that you are not feeling well.

You also need to let him know what kinds of touch or intimacy would be welcome during a time that you are suffering from symptoms.

Fibromyalgia Resources.com also gives the following advice to women who suffer from FM.

It is important to encourage your partner to develop his own independent life from you.

There are going to be many times when you will not feel up to sharing time with your partner, and he needs to be aware of this.

Conclusion

Fibromyalgia is a difficult thing to live with. However, the problem can be multiplied if you don’t know how to communicate about the issue with your partner.

This article has reviewed all of the issues involved in the conversation that you need to have with your partner.

There is a helpful YouTube video that also goes into how you can tell your loved ones about your condition.

A Man’s Guide to Understanding Fibromyalgia

  • Be flexible. With fibromyalgia, plans can change, events can get canceled, and sometimes you may find yourself housebound when you had an important task to do. Gorelick has coped with these realities by keeping his plans flexible and going with the flow as much as possible. “One thing that’s true about fibromyalgia is that you’ll find out who your true friends are,” he says. “I never worried about losing friends over fibromyalgia though. To me, if they are our true friends, they’ll understand what we’re going through.”
  • Expect bad days. Depression and mood changes related to a “bad fibro day” are common when your loved one has fibromyalgia. Again, you need to develop a mind-set that allows you to accept that these days will come. You’ll have good days too, so patience is key here. Help your loved one cope with the bad days in any way you can.
  • Find a support system. Even the most understanding husband or partner is going to need his own support network of friends or family who can act as a sounding board for what he is going through. “I am fortunate in that I have a group of close male friends that I can speak quite openly to about the issues I am facing,” says Gorelick. “For others, a more formal support group might be more helpful.”
  • Be independent. It’s also very important to have your own interests and activities so that you are not always wrapped up in the world of fibromyalgia. “I am an extremely active cyclist and swimmer, and my wife has been very supportive of me continuing these activities,” says Gorelick. “It was our hope to be able to do these activities together as we got older, but unfortunately that hasn’t been the case.”
  • Be patient about intimacy. Aversion to touch and low sex drive are two common fibromyalgia symptoms, and they quite naturally can be frustrating to the partner of someone with fibromyalgia. Work together to find out what kinds of touch feel good and what hurts — maintaining intimacy is vital to your relationship when possible, but you may need to be patient.
  • Communicate. The key to staying together as a couple is keeping the lines of communication open.
  • Encourage your partner to let you know how she is feeling, and you need to express your feelings as well. By doing so, you’ll have a much better chance of keeping your relationship healthy despite the challenges fibromyalgia can present.

    13 Tips for Navigating Romantic Relationships When You Have Fibromyalgia

    When you live with a chronic illness, relationships can seem daunting. Whether you’re single and ready to mingle, just at the beginning of a romance or years into a partnership, you might not be sure how your chronic condition should play a role in your relationship.

    Romantic relationships can be complicated for anyone, but it can be especially true if you live with fibromyalgia, a condition that causes widespread pain throughout your body. Other common symptoms of fibromyalgia include fatigue and cognitive issues, also known as “fibro fog.”

    Though a romantic relationship while living with fibromyalgia might seem intimidating or complicated, it is still possible. Alicia Henry, LCSW, provides therapy in New York for people who are going through life transitions, chronic illness and much more. She believes people with fibromyalgia can be in happy and successful relationships by keeping two ground rules in mind.

    “Fibromyalgia should not define you or your relationship,” Henry told The Mighty. “In any relationship, it is critical to communicate your needs to your partner. This first begins by knowing yourself and understanding what your needs are and how they can be met. Secondly, someone who loves you won’t let living with fibromyalgia be a hindrance to your relationship.”

    Though Henry believes that fibromyalgia should not be the only focus in your relationship, she does recognize this can be easier said than done sometimes. It make take a little readjusting. Henry said working together with your partner gives you a greater chance at happiness. She added:

    If fibromyalgia is affecting the time and/or the quality of time you and your partner are spending together, it is worth examining how you both can adjust to the situation together. This takes open and compassionate discussion with one another.

    We thought it would also be helpful to ask our community for their advice on how they’ve navigated relationships while having fibromyalgia. Sometimes it can be beneficial to hear from others who are going through similar circumstances. Henry also weighed in on the advice our community gave.

    Here’s what our community had to say:

    1. Communicate as often as possible.

    Communication was the most suggested answer by our fibromyalgia community, and Henry agreed. Your partner isn’t psychic and neither are you. Talking to each other is a great way for you both to learn more about each other and the experiences you are going through as well as brainstorm how to work together.

    Communicate!! Make sure your partner knows the symptoms of fibromyalgia and what you deal with daily. Make sure to tell them how you are feeling all the time and never be afraid to ask for help. And also always tell them when you are having a good pain day. This way, if they want to be intimate with you they won’t feel guilty thinking you’re in pain. — @sommerc

    Communicate. Tell your person how you are feeling. Explain what you need for you and from them. Sometimes you can’t be touched because you are hurting everywhere, so explain why. Explain the pain in the best way you can so your person knows that you are not pushing them away; you want to share with them, but cannot be close at that time. It is so difficult to share intimate moments when you can’t be held because it hurts. — Robin M.

    I’ve been with my boyfriend for three years now and honestly just talking and being honest when I’m tired, or frustrated, or whatever. Sometimes it gets frustrating, especially when I’m having a good day and he’s just tired from work or whatever, or when I’ve been having three bad days in a row and honestly just want to grump. But we talk about it and that’s really helped us. — @bloodanube

    2. Remember you are more than “just” your fibromyalgia.

    Don’t forget you’re a full-fledged human and fibromyalgia is only one aspect of your life, including in your relationship. “If your health is always the focus it can put strain on your partner or your relationship over time,” Henry said. She recommended adding to your support network by attending personal therapy or joining communities like the fibro community on The Mighty.

    My husband knows my signs of a bad spell, but even still I find it easiest if I don’t share too much of the details. I often tell him if it’s a fog day or pain day and it’s usually enough. I don’t like fibromyalgia taking over life, so I’m not about to let it take over my relationships too. — Kristi M.

    3. Make sure your partner understands your pain levels.

    Fibromyalgia pain can be difficult to describe, but just try your best to explain and be honest with your partner about what you’re going through. Henry said everyone’s feelings are different, so it’s important to really be specific about your needs.

    My hubby and I have developed a score system so he can kind of gauge how I am. I just score from 1-10 with 1 being totally bed-bound, lying flat, no energy what so ever and in agony, all the way up to 10. Not that I will ever score a 10, but he knows anything below 5 is bad and above I may be able to manage a little something. — Ruth F.

    Always be honest with your partner about your pain levels. Make sure they understand that sometimes you’re just unable to function for one reason or another. And make sure they’re also honest with you about how they’re dealing with your fibro, especially emotionally. — Becca L.

    4. Find someone who accepts you for who you are.

    You deserve to find a partner who accepts you, whatever your health situation might be and all. Henry agreed that if you are living with fibromyalgia, you should be with someone who accepts that part of your life too.

    Find someone who loves you for who you are, fibro, pain and all. It’s a wonderful thing to feel completely accepted and to let go of embarrassment and shame in my daily life. — Jenny L.

    5. Educate your partner on what fibro is like for you.

    “Knowledge about what fibromyalgia is and the variety and range of symptoms is important for any partner to understand,” Henry said. Fibro can be mystifying unless you experience it, so help your partner understand by talking them through your world and pointing them toward additional resources so they can educate themselves.

    Be honest about how you feel. Give them stuff to read about fibromyalgia, or get other people diagnosed with it to talk to them. Sometimes it can be accepted more from someone they don’t know. — @pollyannstubbs64

    Be fair to your partner if/when they don’t understand what you’re going through. It isn’t that they don’t care (or if it is, you are with the wrong partner). It’s that they haven’t experienced what is like, so it’s foreign to them. Communicate about your experience and what your current state is. — Pamela T.

    6. Don’t put all the pressure of how your health impacts your relationship on your shoulders.

    It’s perhaps easy to feel guilty about how your health impacts your relationship, but you’re not alone on that journey. You and your significant other are in a romantic partnership together. It’s up to both of you, not just you, to figure out what works in your relationship and what doesn’t. “In order to have a healthy relationship, each partner should be compassionate about what the other person may be going through,” Henry advised.

    It’s important to be aware of how your partner reacts to your pain and illness in general. There are often ‘silent’ signs of dismissal or disbelief, and this can undermine your own sense of worth and pain validity. If your partner is not respectful of your boundaries (particularly because they change as your pain changes) and redirects conversations about the pain you experience, then that’s a huge sign on an unhealthy relationship. It’s about empathy, from both sides. But you should never be in a position where you feel as though you can’t express your pain or emotions. — Lea A.

    7. Seek out insight together as a couple.

    “I think that a healthy relationship is one where each person works to understand what the other is going through to best support them,” Henry said. While you might be the one living with fibromyalgia, your partner should also be interested in finding advice and insight and working just as hard in the relationship as you.

    Seriously, I think the best advice I have is to always be looking for advice. I have an amazing husband. We talk constantly and openly. Yet I still find myself hiding my most painful days from him at times. Keep looking for that advice. Don’t give up. Don’t choke them. Love them the way you want to be: openly and freely loved. — Michelle J.

    8. Be patient with each other.

    “Patience is key in every relationship, especially when a wrench like chronic illness is thrown in,” Henry said. “Both partners need to be mindful of one another’s needs.” It can be frustrating if your partner isn’t automatically understanding, but that doesn’t always mean they deserve quick judgement for it. Work together on figuring out your relationship and try your best to be patient.

    Even though it is frustrating to the point of madness to feel that people don’t understand you or what you are going through, the best way to keep from derailing relationships is patience. Be patient with the very people who constantly lost their patience with you. For the most part, your loved ones just don’t get it. They don’t mean to be hurtful, they just don’t understand. — @Wendy C.

    Open, honest communication is a two-way street. Don’t lie about your symptoms, but don’t get upset when they may not understand because they don’t experience it. This is NOT to say that you should put up with verbal abuse or put downs, only that you need to help each other. Answer questions, try to explain what’s going on, but don’t get upset if they don’t ‘get it.’ — Vicki B.

    9. Remember that your partner has bad days too.

    Though your partner may have different health circumstances, they are also an important aspect in your relationship. Their mental health and physical health will impact how they show up in the relationship too. Henry said it’s more important to focus on supporting each other rather than comparing bad days.

    If you date someone who has a chronic illness/disability, too, learn to care for yourself when you are both having a bad day — this will greatly benefit your relationship. When my husband and I are arguing because we feel fatigued and still need to do chores or anything, the first one to notice what’s going on just says ‘let’s each care for ourselves right now’ and then the argument just stops (unless something else is bothering us of course). The ability to care for ourselves gives our relationship extra resilience, which helps us through tough times that have nothing to do with pain/fatigue. — Emma Z.

    Two-way communication and two-way compassion. I need to know what he needs and he needs to know what I need. He’s an extrovert and needs time out with people and I need time alone and extra naps. — Juliann H.

    10. Be honest about your life from the very beginning, if you’re able.

    While some feel comfortable being open from the very beginning of a relationship, it might not be something you want to talk about on a first date, second date or whenever. That’s OK. “I believe this is a personal decision best left up to each individual,” Henry recommended. Your attitude about your life with fibromyalgia is unique to you, so it’s your choice about how open you want to be from the start.

    Explain your condition as simply and clearly as possible. Don’t be defensive, just honest. If your friend or significant other can’t deal with it, that is certainly sad, but it’s better to know early in the relationship. You can’t control fibromyalgia or fake it. It is not who you are; it’s something you have. — Bobbi L.

    Honesty is the best policy. If you’re just getting into dating, be upfront about the illness, no matter how difficult it is to admit or talk about. The reaction from the other person will tell you all you need to know about their character. — Jen M.

    11. Be true to yourself.

    Your feelings are always valid and you deserve to be with someone who treats you with kindness. Don’t diminish yourself or lessen your worth for someone else. “If you define yourself as just ‘sick,’ your thoughts and sense of self will likely reflect this,” Henry said. “What you choose to focus on about yourself and your circumstances will guide your emotions and behaviors. Choose a self-narrative that empowers you!”

    My best advice is to be true to yourself. Be honest. Be careful with yourself. Anyone worth being with, will treat you like you are worth being with. Expect kindness, affection and respect, and don’t settle for less. — Shelly C.

    12. Don’t push yourself farther than you can go.

    Balance can be tricky, but it’s important to know how far you can go and what you are capable of and communicate that clearly. “It is definitely important to know your limitations,” said Henry. “I would, however, caution you not to set too many hard limitations for yourself and rather, plan for the worst case scenario. You don’t want to miss out on opportunities for fears of ‘what if’s.’”

    I guess I’d say don’t hide or minimize your symptoms because the other person/people need to know in order to understand, and don’t push yourself to do too much because you think you should. You are worthy and good enough as you really are. — Elaine R.

    Always be honest and never play the hero. Your significant other can be your strongest team member but they need to know what’s going on to help you. — Katherine B.

    13. Instead of feeling guilty for your needs, feel appreciative for your partner instead.

    It can be easy to feel guilty if your partner is supportive and understanding. However, your partner is probably supportive for good reason. Know that you are worthy of that support and focus on gratitude. “Focusing on being appreciative is excellent advice and a great way to keep yourself grounded in the positive,” said Henry.

    My husband does most of the household chores that involve a lot of movement, but on my good days I do what I can. I would say just always communicate thankfulness to them. Don’t feel guilty or grovel. Just express appreciation for what they’re willing to do to help you. If someone can’t understand your limited spoons and spoon theory and makes you feel guilty and they resent you after you’ve communicated as openly as you can, they’re not a good match. You deserve someone who understands or understands as much as someone without fibro can. — Kaytina F.

    Communication isn’t always easy in a relationship and describing what a condition like fibromyalgia feels like can be difficult. Henry is adamant couples counseling can give you and your partner a safe environment to communicate with one another if you or your partner needs guidance or help with coping mechanisms. Please know you are worthy of love and a happy and healthy relationship if that’s what you want. If you are struggling with this, please reach out to someone you trust and talk to them.

    To read more about navigating romantic relationships when living with fibromyalgia, check out the following stories:

    • When Do I Disclose My Chronic Illnesses to the Person I’m Dating?
    • Dear Husband: You Can’t ‘Fix’ My Fibromyalgia
    • Dating With Fibromyalgia, the Unwanted Third Wheel
    • 8 Ways to Make Sex More Enjoyable When Your Illness Makes You Exhausted

    The pain can be consuming (Picture: Getty)

    It can be tough coming to terms with a chronic illness diagnosis.

    And when you do get that diagnosis, it’s important to get the right professional support.

    10 things people need to know about fibromyalgia

    But perhaps even more importantly, the support from friend and family is vital to manage day-to-day.

    I suffer from fibromyalgia, a condition that causes pain all over the body. Although its symptoms are debilitating, what causes the condition is unclear.

    I’ve had mixed results from the rheumatologists, physiotherapists, etc. but my true rock has been my husband.

    He supports me when I’m crying in pain and when the fatigue saps me and makes me grumpy.

    Here are some of the ways you can support someone who suffers from fibromyalgia too.

    1. Learn about fibromyalgia

    Most people don’t know anything about the condition so get googling.

    Some good sources include NHS choices and Fibromyalgia Action UK.

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    This can help you and the person you’re supporting gain an understanding of what happens and equip you both to manage the pain and be survivors.

    (Picture: Getty)

    2. Help them find a regime that helps

    A number of treatments need to come together to manage fibromyalgia.

    Medication helps but other things include massage, paced exercise and keeping warm.

    It can take time to find the regime that works so it can help to discuss the options and adjust over time.

    When you’re suffering, it can be really hard to see the wood for the trees so having someone else who can see the bigger picture and perhaps suggest alternatives can be helpful.

    3. Remind them that it’s OK to stop

    I get incredibly frustrated that my body can’t do what it used to do and I’ll often push myself and become completely exhausted.

    My husband has to remind me that stopping is not failing – it’s looking after myself and this is OK.

    I have to schedule in rest days and I have to be reminded not to do housework etc.

    (Picture: Getty)

    4. Support them to them keep going

    It can be very hard to get the balance right.

    When the pain and fatigue hit, it can take every ounce of determination to keep going.

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    It’s important not to give up or stay in bed.

    A vital part of management is regular exercise so a supporter will encourage the sufferer to keep it up regularly.

    5. Do the little things

    It’s surprising how touching it is when someone else runs me a bath or heats up my wheat bag when the cold is attacking my joints.

    (Picture: Getty)

    6. Take time for yourself

    Supporting someone with any chronic illness can take its toll on you.

    It’s OK to take a break for yourself and when you come back, you can support them with renewed energy.

    7. Stay positive

    Yes, fibro is a chronic, debilitating condition but it’s not the end of the world and everyone involved needs to stay focused on the fact that it can be managed.

    I have found that having the right support is the difference between fibromyalgia controlling me and me controlling my fibromyalgia.

    MORE: 7 things people should know about self-harm

    MORE: 10 things nobody tells you about therapy

    MORE: How my invisible illness left me housebound and put my entire life on hold

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    The daily lifestyle email from Metro.co.uk.

    Find out moreWe do daily physical and mental health check-ins.

    From the very beginning, Nick and I promised we’d get through this together. That requires honesty—I don’t hide when I’m not feeling well, and he doesn’t hide his frustration. Rather than trying to “spare” the other, we check in on a daily basis, and that includes checking on both mental and physical health.

    That means asking specific questions and really listening to the answers. Instead of “How are you feeling today?” Nick might ask, “On a scale of 1-10, how high is your pain?” In turn, if I’m feeling fatigued or overwhelmed, I’ll say so, giving us the opportunity to talk it out.

    According to Annmarie Cano, Ph.D., professor of psychology and associate dean of the graduate school at Wayne State University, that type of honest communication is essential to a relationship’s success. “Couples must develop a habit of knowing how they’re feeling, learning how to express it to the partner, and really listening in a non-judgmental way when the partner discloses emotions that might heighten the other partner’s distress,” Cano tells SELF. “Sometimes partners get so distressed, they tune out, which does not help the disclosing partner manage their difficult emotions and can lead to increased distance.”

    While dealing with illness is taxing, so is living with someone who does. Nick’s feelings about how my symptoms affect him are just as valid as the symptoms themselves, and we’re both entitled to our feelings. That also means we work to educate one another. We share research, books, and articles on living with chronic illness so we’re armed with the language to communicate about our circumstances.

    We work with—not against—my limitations.

    As we’ve gone through this chronic illness journey together, we’ve had to learn where my boundaries are. My body processes stimuli differently than the average person’s, so awareness of how it’s going to affect me is essential. Fibromyalgia patients may feel more pain than would be expected based on the amplification of pain through their central nervous system, according to a 2014 clinical review by Daniel Clauw, M.D., researcher and director of the Chronic Pain and Fatigue Research Center at the University of Michigan.

    He compares that heightened response to tuning an instrument. “Pain processing is akin to the loudness of an electric guitar,” Dr. Clauw tells SELF. “To make the guitar louder, you can either strum the strings harder (i.e. there is something going on in the tissues) or increase the volume control on the amplifier (i.e. there is something going on in the brain)—which then makes all pain and sensory information more intense.”

    Even a day of too much stimulation—say, walking around a busy festival or working around the house—will turn my dial up to 11, and make it hard to get out of bed the next morning. That means we have to plan carefully, but it doesn’t mean we stop going out. We could all use a little balance, and my limitations just demanded that we learn that sooner rather than later.

    We know that supporting our relationship takes a village.

    Keeping us resentment-free requires a three-tiered approach. First, my rheumatologist keeps my physical health in check. Second, my talk therapist provides tools to keep our mental health—and our marriage—stable. And third, my husband and I work together to implement those tools and keep our relationship strong.

    Managing Chronic Fatigue Syndrome and Fibromyalgia

    22. Couples Issues

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    CFS and fibromyalgia put couples under stress. This chapter offers strategies for addressing three problems faced by couples: sexual difficulties, strained communication and caregiver burnout.

    Improving Intimacy
    When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple’s sex life, but, like other aspects of long-term illness, intimacy problems can be addressed as well.

    When we asked people in our program to describe the effects of their illness on their sexuality, all those who responded said that illness had reduced their sexual activity.
    Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications. Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.

    Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways. Here are six of the most common adaptations.

    1. Talking. Several people reported that their relationship with their partner improved after they talked openly about their reduced interest in sex.
    As one said, “I explained that I still loved him and felt the same (or more strongly) about him, but I just couldn’t show that through initiating sex…I have no desire for self-pleasure either. Explaining that sure made a difference to his acceptance of my state!”
    Others reported that they benefited from open communication in bed. One said, “I let him know if a certain position hurts and we change positions.”

    2. Alternative Activities. Another very common theme was adapting to illness by focusing on alternatives to conventional sex. One person wrote, “The times I am not up to having intercourse, he knows I am usually up for some cuddling and happy to satisfy him another way.”
    Others wrote of alternatives to intercourse, for those who think that appropriate. “You don’t have to have intercourse to be sexually connected…You can be satisfied by manual stimulation and also oral sex.”

    Others have found other ways to express their affection: through hugging, kissing, and holding hands, through words of appreciation and thoughtful acts, and through shared activities like going out for dinner together, watching a favorite TV program or giving one another a massage. One said, “We still hug, kiss and say ‘I love you’ lots. I feel we have a very strong and healthy relationship.”

    3. Planning. A third common adaptation is planning for sex. Several people mentioned taking extra rest or reducing their activity level on days they anticipated having sex. Also, a number said they and their partners plan “dates.”
    One said, “What my husband and I have learned is that we need to schedule a ‘date’. I actually put it on my calendar.” Another said, “The ‘date’ planning has worked for me because I tend to do less of the things that I know will cause me residual pain.”

    Others mentioned being mindful of time of day. Pain and other symptoms may be lower during certain hours of the day. By timing intimacy for those times, couples minimize discomfort and increase enjoyment.

    Another couple reported increasing the frequency of sex through making a commitment to having sex once a week. The wife reported that more frequent encounters made sex less painful and her husband “is much more cheerful and doing more around the house.”

    4. Flexibility and Experimentation. Given the often unpredictable course of CFS and FM, it can help to be flexible about when sex occurs and what positions and activities are involved. One person said, “We’ve experimented with timing (morning is best), position (I seem to do best on my side) and lubricants.”
    Others use observation as a basis for experimentation. One person wrote, “I noticed that in the summer I had more desire and realized it had to do with the heat, so we started to shower together.”

    5. Addressing Pain and Hormone Problems. Some people said that their sex lives improved after treatment of pain and hormone problems. They reported treating pain by the use of pain pills, topical ointments, massage and heat, and by adapting how intimacy occurs.

    There are several factors involved in the use of medication. One solution is for the person who is ill to time the taking of pain medication so that it will be at peak effectiveness when sex is planned to occur. The type of pain medication is also important.
    The person with pain may want to avoid narcotic pain medications and tranquilizers, which dull the senses as well as reducing pain. Other means of pain reduction include taking a bath before sex, stretching and massage.

    Pain can be reduced by using positions that are comfortable, by changing positions periodically during intimacy and by alternating activity and rest. Another pain control approach is the combination of distraction and meditation.
    Distraction means reducing pain by placing attention elsewhere, focusing on sensations, both those given and those received. Also, concentrating on mental images of making love keeps the mind focused on pleasure, distracting attention from pain.

    Several people in our groups also commented on how their interest in sex had improved with hormone treatment, either estrogen, testosterone or both. One said that testing showed that both her estrogen and testosterone levels were low. Treatment of the latter “not only helped libido, but my energy level as well.” Hormone problems can also affect men.

    6. Emphasis on Caring. A number of people distinguished between intimacy and sex, and said they and their partners focused on closeness and mutual caring. One wrote, “Sex is important in a relationship, but I don’t feel that it is the most important. I think all of the little everyday things that we do for each other and being supportive of each other is what really makes a marriage.”

    Another said, “My husband and I have found we don’t NEED to express our affection sexually…For us, sex does not compare to the kind of fulfillment which is a beautiful thing when shared between two people who are filled with warm, tender, loving feelings toward each other.” She wrote of expressing affection through sharing time together, touching, caressing, and cuddling.

    CFS or fibromyalgia do not have to mean the end of sex. Using flexibility, experimentation and good communication, couples can continue to enjoy sex and may be able to strengthen their relationship. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can foster closeness.

    Improving Communication
    The stresses brought by serious illness can make good communication difficult. To complidate matters, CFS and FM create the additional challenge of cognitive problems. Here are seven ideas for how to improve communication if you or your partner have CFS or FM.

    1. Pick a Good Time and Setting. If you have something important to discuss with a significant person in your life, select a time when both of you will be at your best. It should be a time when both of you can give good attention and you will not be distracted by pain or brain fog, preferably during your best hours of the day. Choose a place that minimizes distractions and interruptions.

    2. Practice Good Listening Skills. Good communication is based on each person understanding the other person’s views. Understanding begins with listening, which means focusing your attention on what is being said, with the goal of understanding the speaker’s point of view.

    Listening works best if it occurs without interruption. After the person is finished speaking, respond by acknowledging having heard them. You might say something as simple as, “I understand.” If you are not clear, you can respond by asking for clarification or more information. You might say something like, “I’m not sure I understand. Can you say something more?”

    From time to time, check whether you have understood the other person’s position by restating it in your own words. You could say, “Let me try to summarize what I’ve heard and you can tell me if I’m understanding you.”

    3. Focus on One Thing at a Time and Be Specific. Focus on one issue at a time. If you are requesting that the other person change, be specific in your request. Avoid making general requests such as, “I need help with the housework.”
    The person being asked may wonder what would be involved in responding to the request. Instead, say something like, “Can you do a load of laundry today?” or “Can you do the grocery shopping?”

    If you are the one being asked to do something, it’s reasonable to defer giving a yes or no answer until you are confident you understand what is expected of you. You can ask, “What specifically would you like me to do?” Even if you decide to decline, you can still acknowledge the importance of the request to the person asking for help.

    4. Aim for Solutions. Have as your goal finding solutions, not blaming one another or finding fault. The idea is to be able to discuss problems in a constructive rather than a confrontational way. Treat each other with respect, acknowledging his or her support and effort. Avoid demeaning comments, sarcasm and blaming. Acknowledge your part in shared problems and express appreciation for the other’s efforts.

    5. Use Problem Solving. Use problem solving to find solutions. Begin by brainstorming, which means thinking of a variety of possible ways to solve a problem. In brainstorming, the goal is to generate as many ideas as possible, without evaluating them.
    For example, if your problem is how to do household chores when one member of the family is ill, alternatives might include dividing up the chores differently among members of the family, hiring occasional or regular assistance, simplifying tasks (for example, having simpler meals or cleaning less frequently), and moving to a smaller home that is easier to maintain.

    Second, you evaluate each proposed solution, decide which ones are most promising and try one or two of them. Third, after giving each solution a fair try, evaluate the results. Some potential remedies may not work, so you may need to have further discussions and try other solutions. The final solution may be a combination of several approaches. If several strategies are unsuccessful, you may decide that a problem may not be solvable or not solvable at the present time.

    6. Consider Getting Help. In many cases, you will be able to solve your problems yourself, but at times you may want to get help, either in understanding the causes of your problem or in finding solutions. So it may help to ask what resources are available to you. For example, to get a fresh perspective on your situation, you might ask other families how they have solved a similar problem or you might ask what community resources (church and public groups) are available.

    Also, if conversations about your problems are not productive, you can consider getting professional help. A counselor can facilitate a solution to particular problems and also help you practice good problem solving skills.

    7. Have Regular Relationship Discussions. Finally, here’s a technique that one couple in our program uses to nurture their relationship and to solve problems in their lives: having regular discussions of their relationship. They set aside Sunday evenings as a time to discuss any issue that is on their minds, calling it their “talk night.”

    Having regular discussions means that both husband and wife know that they have a forum in which to state problems and frustrations, and a means for finding solutions. Also, because the talks are frequent, they can refine their communication skills through regular practice.

    The husband explains that “Anything either of us sees as a problem or causing stress is a likely topic. Even very minor things are OK.” Topics include an issue one has with the other, problems with friends or children or problems around the house.
    “A rule is the we each openly listen to the other without being defensive. We problem-solve together to come up with a resolution for each issue. After doing talk night we start each week refreshed and with the feeling that comes from having dealt with whatever problems were there.”

    Tips for the Caregiver
    Caring for someone with CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties.
    Even with all the challenges brought by serious illness, there are many ways to take care of yourself. Here are nine to consider.

    1. Maintain Your Health. This is the number 1 recommendation of experts on caregiving. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well and to exercise.

    2. Accept Help. When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, housecleaning and transportation.

    3. Take Time for Yourself. Get a respite from caregiving by spending time away from the person who is ill, for example by pursuing a hobby. Give yourself an opportunity for leisure and enjoyment, a way to recharge your batteries.

    4. Educate Yourself. Seek information about CFS or FM, especially strategies for reducing symptoms and improving quality of life. One source is the articles on our website. See the article “Educate Yourself” for a list of patient organizations, other websites and books about the two conditions.

    5. Stay Connected. Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or outings with friends, spending time with children or any other kind of socializing that keeps you connected with others.

    6. Consider Counseling. Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed or burned out, or over-reacting, such as by angry outbursts.
    Counseling can be helpful for gaining perspective on your situation or to explore communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.

    7. Grieve Your Losses. Just as people with CFS and FM experience many losses, so do those around them. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contribution.
    And, just as the person who is ill has lost the future she hoped for, so do you have to adjust your dreams for the future. Like the person in your life with CFS and FM, you, too, need to grieve your losses. For ideas on how to work through loss, see the discussion of finding a “new normal” in the previous chapter and also Chapter 26.

    8. Create New Shared Activities. Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together.
    One couple told us they took up the study of music using courses on DVD. The husband in another couple said that once he realized his wife’s new limits, they shifted from camping and hiking to dinner and a movie.

    The point is to create occasions for shared pleasure, so that the relationship is strengthened and both ill and healthy members of the family don’t come to see their relationships as just about illness and deprivation.

    9. Seek Support from Other Caregivers. Fellow caregivers can offer strength, support, inspiration and models of successful adaptation. You might meet such people through patient support groups.

    21. Family Issues Up 23. How Family and Friends Can Help

    Contact Us

    The Internet has been flooded recently with blog posts about “What not to say to someone with chronic pain, fibromyalgia, etc.”. You’ve probably seen a few show up in your news feeds – in fact, we’ve shared a few of them ourselves. They can absolutely be helpful to friends and family members looking for some “fibromyalgia etiquette” or advice on things they may say that could inadvertently hurt their loved ones with fibromyalgia.

    Seeing all these wonderful blog posts got us to thinking – what about the things you SHOULD say? Now that they’re well versed on what not to say, it may be helpful to know which things we may want them to say. Of course, not everyone with chronic pain like fibromyalgia is the same – but we tried to create a list of six things we thought most with fibromyalgia would want to hear from friends or loved ones.

    If you suffer from fibromyalgia or another chronic illness – share this list with your friends and use it as a conversation starter to help them understand how your fibromyalgia affects you.

    If you don’t suffer from a chronic illness but are looking for ways to support a friend or loved one who does – try discussing these ideas with them and use it as an ice breaker to allow them to tell you what kind of support might be best for them. You might think they don’t want to talk to you about it – but more often than not we like to be open about it but stay silent out of a fear of sounding overbearing or burdening you with our problems.

    With that said, lets take a look at these 6 things you can (and probably should) say to someone with fibromyalgia:

    #1 – Tell me about fibromyalgia…

    Sounds simple, right? It is. But believe it or not – most of us would jump out of our skin if a friend or loved one asked us this. Why? For starters, we often feel ostracized for our condition because the symptoms are largely invisible. There is a constant worry that others won’t believe that our symptoms are real. This fear of being ostracized or having others doubt us can make us become guarded or fearful of discussing it.

    Hearing this question (if asked genuinely) is reassuring. It shows that you’re genuinely interested in understanding it. Most of the time, we’re willing to talk about our condition – but don’t want to overburden anyone. This question can break down barriers and allow us to feel comfortable sharing facts about fibromyalgia and how it has affected our lives.

    MORE: 10 Things Your Family & Friends Need to Know About Fibromyalgia

    The only caveat here is that you be open-minded and fair when listening to our answer. We may not always be able to explain things perfectly and you may have lingering questions or doubts – but as long as there is a genuine interest in understanding and mutually respectful discussion you might not be able to shut us up!

    #2 – Tell me about how fibromyalgia has affected you personally – and the impact it has had on your day-to-day life.

    This is a good piggyback question to the first. More than understanding what fibromyalgia is – we want people to know HOW it affects our daily lives. Giving us the opportunity to tell you about it can help us get it off our chests and can give you a better idea of the real life implications of a chronic illness. Use these first two questions as a way to break the ice and open up a productive dialogue about fibromyalgia.

    #3 – I can’t imagine having that much pain everyday…

    You might be tempted to talk about a time you experienced some pain in an effort to relate or empathize with our pain. But unless your pain was severe and chronic (lasted more than 3 months) – don’t do this! Don’t get me wrong – we understand and appreciate that you’re trying to empathize and its coming from a place of love. However, it can be frustrating to have someone who hasn’t experienced what we have compare their temporary/fleeting pain to our daily struggle with widespread pain.

    Often times these comparisons reinforce to us that others don’t understand our pain and leave us feeling more frustrated or isolated. Imagine trying to comfort a young U.S. Marine struggling to make it through the physically punishing “hell week” at boot camp by telling him or her that you once did a 1-week Zumba boot camp at the local gym. Naturally, the Marine would find little comfort in this and might take exception to the comparison.

    So if you haven’t experienced pain or discomfort on the same level as fibromyalgia – simply tell us that you couldn’t imagine having that much pain everyday. This statement has more power than you might think. We don’t necessarily need you to understand what it’s like (though some days we may wish you could feel it for just a moment so you understood) – but knowing that you understand the pain and discomfort are extreme is comforting in and of itself.

    #4 – I’m here if you ever need to talk

    Everyone has bad days, regardless of if they have a chronic illness or not. We all need a confidant or someone to vent to. For those of us with fibromyalgia – this is even more true. If you feel comfortable making yourself available to lend an ear – let us know. Knowing that there’s someone willing to listen – even if they don’t fully comprehend what it’s like to live with fibromyalgia – can be a lifesaver. We don’t need you to answer or fix our problems, but simply listen and console when necessary.

    #5 – It’s okay if you can’t…

    …go out tonight, meet me for a coffee today, etc. Besides the pain and physical discomfort of fibromyalgia, one of the things that can torture us emotionally is the guilt of not being able to live the life we once did – especially when it comes to our social life. There will be days when plans will change – when we can’t do something we fully intended to do.

    MORE: 4 Traps to Avoid if you have Fibromyalgia

    If we cancel or decline an invite with you, please know that it’s nothing personal and that it’s not because we’re lazy, uninterested, etc. We are often racked with guilt when these occasions arise – so knowing that you understand why we can’t make it and hearing the words “it’s okay” can help quell some of the guilt and emotional turmoil we feel.

    #6 – What is the best thing I can do to help or support you?

    The beauty of this question is that it is open-ended, so it is up to each individual to decide what the best support you could give them is. Even though those of us with fibromyalgia have a lot in common and can relate on many levels – we’re still unique individuals with varying opinions and situations. What may help one person may be of little help to another.

    MORE: 7 Tips for Supporting a Loved One with Fibromyalgia

    Let the person in need of help decide what the best way for you to support them is. If you think they are hesitant to ask for your help even though you’ve offered, press them a bit. But if they continue to be hesitant, simply tell them it’s a standing offer and remind them as appropriate.

    So there you have it – a few simple suggestions on what you SHOULD say to your friend or family member with fibromyalgia. Above all – remember to be open, communicate often and be aware of/sensitive to their situation. If you’ll let them know you’re there for them, the rest will usually take care of itself.

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