Fibromyalgia and Relationships

Episode 30 - Fibromyalgia and Relationships
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full transcript: https://www.buzzsprout.com/1890983/11136800
In this episode,  I discuss how we and our human brains deal with a chronic illness; how to support each other in this journey from both the perspectives of the patient and their close relationships.

Domestic Violence Resources:
USA + other Languages: National Domestic Violence Hotline  Hours: 24/7. Languages: English, Spanish and 200+ through interpretation service
https://www.thehotline.org/  800-799-7233

National Sexual Assault Hotline  USA- but can get connected to global resources: Hours: Available 24 hours    https://www.rainn.org/resources
1-800-656-4673

YouTube episode - https://youtu.be/mFptlmptKoE

If you are interested in the course - it covers both nutrition and sleep,   you can sign up for the waitlist on my website. - WAITLIST  Mindful Eating for Autoimmune conditions, chronic pain, and fibromyalgia course.  (https://www.rheumcoach.com/mindfuleatingwaitlist).

YouTube Channel: https://www.youtube.com/channel/UCHmh3SkdrrBhS--I6_8IJAQ   - a few example videos from the course and other content.
YouTube episode - https://youtu.be/P6qM_IMcOOk

Please email me at rheumcoach@gmail.com if you try it or if you have questions. I would love to hear from you.

If you are not part of my newsletter, please sign up; the link to sign up is on my website https://www.rheumcoach.com/

 www.rheumcoach.com - my website

www.rheumcoach.com/FibroCard - Download your FREE copy of the "Fibromyalgia is real" postcard to share with your family & friends

www.FaceBook.com/rheumcoach - lots more information about fibro
Follow me on Instagram:  https://www.instagram.com/rheumcoach/

Disclaimer: This podcast provides information only and does not provide any medical or psychological services or advice. None of the content on this podcast prevents, cures, or treats any mental or medical condition.

Transcript

Episode 30

Believe it or not, relationships come up a lot in my rheumatology office. A chronic condition or chronic pain is a major life stressor, affecting not only the patient but everyone around them – from family and friends to coworkers or even doctors.

If you are a family member, a spouse or partner, a child or parent, a friend or coworker of someone diagnosed with fibromyalgia or any other chronic condition, thank you for listening. I will talk to you later in this episode, so please stick around! If you are new to this podcast, welcome, and thank you for taking the time to support someone with fibromyalgia. This small task of listening to a short podcast episode likely means a lot to the person in your life who has fibro, a little gesture of love and support, and a sign of acknowledgment. So, thank you!

If you are in an abusive relationship or a victim of domestic violence, I am so sorry. Please get help, look for local resources as I know many of you listen from various global locations, and I also put some links in the show notes. Please know that there is an association between a history of intimate partner violence, domestic or childhood abuse, adverse childhood experiences or trauma, and the development of functional syndromes, including fibromyalgia and chronic fatigue syndrome. This episode may be triggering or, as I prefer to say, can negatively activate the nervous system of some, so please be aware and pause when you need, seek support, and do self-care, as I provide information only and not specific treatment or advice.
Domestic Violence Resources:
USA + other Languages: National Domestic Violence Hotline  Hours: 24/7. Languages: English, Spanish and 200+ through interpretation service
https://www.thehotline.org/  800-799-7233
National Sexual Assault Hotline  USA- but can get connected to global resources: Hours: Available 24 hours    https://www.rainn.org/resources
1-800-656-4673

The effects of living with chronic illness do not happen in isolation, although often the patients feel unsupported or unloved, misunderstood, or feel like they carry all the pain and suffering alone. It's easier to live through or support someone with an acute illness, something short, like the flu or a sprained ankle. The patient knows there is an end to it, it will pass in due time, and the people in your life know what to do in this situation – they may offer support like a pot of chicken soup or a meal, a remedy, or let you sleep extra while they help with household chores. How we act when we are ill or how we support others in such typical situations as the flu – was modeled to us through childhood, and our brains know what to do. In my family, the flu will get you chicken soup, a hot tea with honey, raspberries, and lemon, and lots of rest. When my kids see a pot of tea with lemon, raspberries, and honey – they know someone is not feeling well; it is now a visual clue, an association of the acute illness that will get better in a short time and the hot tea, we all think that tea is miraculous. If you look at your life, you will probably find many associations like that – from the remedies we use for menstrual cramps to migraines and hangovers to cuts and sprains. Someone in our life has taught us how to kiss boo-boos and show support when someone is ill.

However, not many of us know what to do when you or someone is ill for a long time. Having a chronic illness that may never go away affects not just the patient but everyone to some degree around them. And we often are not taught or have experience with how to be that patient with a chronic illness or how to care for or live with someone who has it. There is no fibromyalgia 101 in grade school to prepare you for this condition and no orientation to the family on what to do when the patient has an illness that may span a lifetime.

So, in this episode, I want to examine how we and our human brains deal with a chronic illness; how to support each other in this journey from both the perspectives of the patient and their close relationships.

 Let's first talk about the stress of chronic illness- a condition that lasts a long time, often for a year or more. Your sources of stress may be numerous: the chronic illness symptoms themselves, the management of it, the actual treatment, but also the uncertainty about your future, the unpredictability of the disease, the disability or changes in your abilities, both physical and mental, and financial complexities.

You may feel not understood, thinking that other people may not believe you are ill or may not understand the seriousness of your condition; well, you don't look sick, they say! Limitations and unpredictability of symptoms can make it challenging to maintain relationships- not participating in activity because of a flare or leaving early because of sensory overwhelm. Some relationships may be lost, while others will be redefined over time. There may be fears of dependency and abandonment: you may worry about losing your ability to care for yourself or fear that others you depend on will leave you. Isolation is a thing – many may feel a sense of isolation, either because of their spending more time alone or because of feeling different from other people. Add guild to the mix – many blame themselves for getting sick or not contributing to family or society.

These may be real or perceived difficulties, but they drive many thoughts about your past, present, and future. Your thoughts about your condition will drive your feelings. Chronic illness and chronic stress are emotional experiences, with many feelings such as anxiety, panic, depression, sadness, denial, rage, fear, grief, irritability, guilt, shame, feeling unworthy, overwhelmed, or confused. Often patients ride a roller coaster of emotions, both positive and negative, some days feeling empowered, and some days defeated. These emotions drive your actions – how you cope with your illness and deal with yourself and others. The empowering feelings lead you to better self-advocacy, management of medications or appointments, and better self-care like diet or exercise. The negative emotions will result in different actions –feelings of hopelessness, for example, may result in stopping all meds, quitting diets, or isolation - the feeling, loss of hope, drives the actions, not the illness itself. Your actions will produce results- but the results are always driven by the thoughts, not by the actions. So, the thoughts produce feelings that create actions that lead to results. You can always look at your results and find the thoughts and feelings that drove you to them. These will also find the way you deal with others, like family, friends, and even doctors. When I was at the Mayo Clinic rheumatology fellowship training, I had 2 types of patients who were diagnosed with fibro. They both had the same diagnosis – fibromyalgia, and other conditions were ruled out. We were often their second, or 3rd, 4th opinion. One set of patients, when they were given the diagnosis, felt blessed – they were relieved that they did not have lupus or some other autoimmune condition, infection, or cancer. The other category was mad, clearly upset they did not have lupus, or RA, or something more "tangible." So, the circumstance was the same, a new diagnosis of fibromyalgia, but the thoughts were different – one patient thought it was the best news ever, the best outcome of the workup, and the answer that was acceptable -they had fibro, that led them to feel blessed, resulting in positive actions. 

The other person's thoughts about fibro were: this is not real, they just don't know what I have, this is a trash diagnosis, I can't believe I came all the way to Mayo for them to tell me this nonsense, I know what I can do with lupus, there is treatment, but what do I do with fibro, etc. I heard all this and more from many patients, not unique and totally understandable – but these thoughts lead to feelings of anger, disbelief, and frustration, and the actions would probably lead them to seek yet another opinion, not treating fibro, lashing out. So same circumstance, a new diagnosis of fibro, but different thoughts about it, that lead to different feelings, producing different actions and results.

So, I want you, the patient, to take a pause and examine your thoughts about fibro or whatever your chronic condition may be. What thoughts do you had or have about fibromyalgia? Can you identify the feelings? Your actions? Your results? This exercise will help you identify your attitude, coping methods, and adherence to treatment. Now you may have conflicting thoughts about the same circumstance that you will have on different days or even times of the day; write them down, look at them, and try to identify the feelings these thoughts produce, what actions you take and what results you see after.

Now I invite you to look at your childhood and later life and think about how people who were close to you, your family, relatives, friends, teachers, or coworkers, dealt with a short-term or longer-term illness or stress. Did you have a ritual like chicken soup or a special remedy when you had a cold or flu? Did you rush to the emergency room for every sprain or illness? Did your parents hover over you, worrying or catastrophizing or opposite, ignoring you or even neglecting your needs? Did you feel safe? Did you feel loved? Did you feel supported and understood? Now, this exercise can be activating to your nervous system, and you may need to pause and process these emotions.  

Patients who have chronic pain, autoimmune conditions, or fibromyalgia often have a history of adverse childhood experiences or trauma, difficult or scary experiences that were overwhelming, upsetting, or left them feeling helpless. Not all overwhelming or life-threatening experiences are considered traumatic, and everyone interprets our unique experiences differently. A life experience that is traumatic or stressful for one might not be traumatic or stressful for another. We are talking about experiences that negatively activate your nervous system. Now I will devote future episodes to adverse experiences and trauma, but for now, you may want to acknowledge that many of our behaviors, thoughts, and beliefs come from our prior experiences, both positive and negative experiences, as well as our relationships with others. Our nervous system was designed to be in a relationship with others, and co-regulations with others is part of healing – now, this is a complex topic, and this will be discussed in other episodes as well. But your experiences may lead you to be perfectionistic, have all or nothing mentality, or become co-dependent or people-pleasing. You may play a role of a rescuer or want to be rescued, often rooted in the deep discomfort with having discomfort - your own and that of others.  

You may have a manual of how you want others to act around you and your illness. A manual is an instruction guide we have for someone in our lives about how we would like them to behave so we can feel good and be happy. We generally don't tell the other person what's in our manual, and we usually don't even realize we have it or see the pain it causes us. We feel that the other person should just "know" what to do and how to treat us. While it may seem justified to have expectations of other people, it can be very damaging when your emotional happiness is directly tied to them behaving a certain way.

This manual also ties to the love languages, or how we show affection and perceive affection.  

According to Dr. Gary Chapman, author of the book the 5 Love Languages, there are five love languages. Our "love language" describes how we give and receive love from others. For someone, feeling loved will be by hearing the words of affirmation – hearing supportive or loving words or words of encouragement from others- in person, by a phone call, letter, card, or Facebook message. For others, it may be the Acts of Service – when others do helpful things for you. Someone will feel loved by receiving Gifts – gifts will tell you are being thought about, and you feel loved by getting care packages, flowers, and food. Other people feel loved when they receive quality time –when someone spends meaningful time with them, visits them, or goes to the doctor together. Or it may be a physical touch - being close to and caressed by your partner, getting hugs and kisses.

So you and people around you may speak a different love language. You may only feel loved when someone does acts of service for you, doing helpful things, like taking your car to service or doing dishes, while your partner shows his love by giving gifts – buying you yet another blanket or a foot massager.

So to summarize – you have thoughts, beliefs, and feelings about your illness. It's totally normal but often not thought about. You also behave and expect others to behave around you according to your prior experiences, your thoughts, and feelings. Again, normal and expected, but we often don't take time to think about it, or thinking about it may be upsetting. You have expectations of support and love, and the love language that you have that speaks to you. You may have a manual of how you want others to act around you and your illness. So, you may want to take your time to think about the information I provided and listen to this episode a couple of times. Processing your thoughts, feelings, and actions and working on adjusting them to get the results you want and need will be the goal for you, not the other people; as I hate to break it to you, we can't control others or change their thoughts, believes and actions only they can. How you think about your illness, how you self-care, how you set up boundaries with others, and deal with your thoughts and feelings, will ultimately help you find the power and focus on living, not merely surviving.

Now, let's shift gears and talk about your support circle. If you are a family member, a spouse or partner, a child or parent, a friend or coworker of someone diagnosed with fibromyalgia or any other chronic condition, again, thank you for listening.

It takes two to tango, and our relationships involve other people. When someone has a chronic illness, there are two parties involved - the person with such illness and all others -family, friends, loved ones, people of the inner circle, outside the circle, doctors, coworkers, etc.  

In the 1st part of the podcast, I spoke about the patient experience and how they are coping with stress and illness resulting from their thoughts and feelings. It may be the 1st time you hear about this, and it may be thought and feeling producing in you, activating your nervous system, or triggering you. It is not my intention to exacerbate the divide but to actually bring all of you closer. There should be no blame or shame. But it may be a conversation-provoking episode that improves your communication. Use this information with curiosity and kindness, respect, and compassion.

But now, I want you to please focus on yourself, not the person who has fibro.

First, I want you to know that the way you support others is the best way you know how. 

Just like the person who has fibro, you too have your story, your thoughts, and your feelings. You have your love language that you use when you show and receive love and affection, and it may be very different from the person you are trying to support.

Serious illness puts pressure on most relationships. Very often, predictability is replaced with uncertainty, stress is increased, emotions are intensified, and many practical aspects of daily life are altered.

If this is your spouse or partner, you too worry about the future, financial strain, caregiving or childcare responsibilities, extra household tasks, loss of companionship, sexual difficulties, communication, and socializing. You may feel overwhelmed, uncertain, sad, and depressed, with episodes of resentment and frustration. You may feel uncertain about how to help. This is all normal. A person who used to be healthy now has a lot less energy than before, is often in pain, has trouble thinking clearly, and finds themselves easily overwhelmed by stress or even by light or sound or your touch.  

Now I will devote other episodes on practical aspects of adaptation: household tasks, finances, socializing, and other more physical relationship adjustments like sex and intimacy.

But today, we are talking about coping.

Now the beginning of the episode, I talked about how our thoughts and feelings drive our actions and how our past experiences, like childhood trauma or stressful events, affect our coping. Guess what? It does not only apply to the patient. I would recommend listening to this episode a couple of times – 1st from the personal perspective and another time from the perspective of a patient with fibro or a partner. Probably you will see multiple points of view that you may not have thought of before.

We all deal with illness differently.

How do you, the family member or a friend, cope with a short-lived illness, like the flu or sprained ankle? How did your parents model you to care for yourself or others with an illness? What do you do, how do you feel being cared for, or how do you show your care when someone is sick? What is your love language to receive or show love? Is it by providing the words of affirmation - telling supportive or loving things to others; do you show love by the Acts of Service by doing helpful things even if they did not ask? Are you a giver of gifts? Do you feel compelled to send a card or flowers or bring a meal? Do you give them time by sitting with them, listening, and sharing quality time? Or do you need to give a physical touch, like hugs and kisses? You can probably easily identify your love language by thinking of the last birthday or valentine's day – what did you gift, and what did you expect or want? Did the dinner and holding hands count, or did you need a big gift to count? I can tell you, my love language is cooking – I love to cook and feed people, so if you are ever in my house, I will feed you; that's my love language. Now, I feel loved when someone does the dishes after I cook, and if you scrub the pots, I would feel extra loved.

You may also have additional stress from our thoughts. If you are a parent or a partner of someone with a chronic illness, your thoughts can be another source of stress. For example, you may have unrealistic expectations. If you believe you can protect the patient in your life from suffering, you may feel continually disappointed in yourself. If that's the case, you can reduce stress by changing your expectations. Becoming aware of and changing the standards you have for yourself to make them more realistic reduces stress. If you hear yourself think with lots of "I should" or "I could," you are beating yourself up and adding to the stress. Again, you may have a manual of how your or the patient needs to behave, which may spill into what they should do about treatment, attitude, lifestyle, self-care, etc.

I will devote future episodes to co-dependency. Co-dependency often have you channeling your energy into supporting the people in your life without making space for — or even considering — what you need for yourself.

The main sign of co-dependency is consistently elevating the needs of others above your own. Now, this may be the actions of the patient or the person in their life, or both. Co-dependency signs include controlling behaviors, self-sacrifice, and fear of rejection. Understanding what co-dependency really is and recognizing the signs of co-dependency in your behavior is an important first step toward building healthy boundaries and honoring your own needs. So the person who has fibro may get into the push and crash cycle – they push themselves to get this done for others, then crash in a flare stirring up the feelings of regret, resentment, and anger, often feeling unappreciated and drained.

Now I touched on a lot of topics in this episode. I wanted for the patients and their support hear both sides without splitting the episode. I want to remind you that the mind and body are connected, and mental health is as important as your physical health. I hope this episode is thought-provoking and a conversation starter with yourself and others. Look for help and resources around you that may help you cope with your chronic illness – therapy, family and marriage counseling, life coaching, talking to friends, church family, etc... Building relationships in real life, not just a virtual life, is needed for healing; you need your tribe.

 Thank you for listening; I'll see you next week!