This is a BLOG written and created by Nikki Albert, who has chronic migraines with aura and fibromyalgia.
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#Fibromyalgia and #Relationships
Often studies look at the impact of how fibromyalgia and chronic pain impacts the workplace and the individual but there has been very little to look at how it can affect relationships with our significant others, family and friends. We know the burden of illness on the individual is high in regards to fibromyalgia and we know it can adversely affect a person’s career and it is obvious the stress, isolation and guilt of these factors alone will carry forth into other aspects of the person’s life.
Recent impact study on fibromyalgia
A recent 40 question multiple choice survey was posted online for a two month time period through various fibromyalgia and migraine forum websites. The objective was to poll a large sample of adults with FM about the impact on their significant other, friends and children. Questions included were regarding their symptoms, their demographics, any comorbid mood conditions, the relationship impact (with Relationship Assessment Scale) There were 6126 respondents to the survey who had been diagnosed with fibromyalgia.
“Using updated diagnostic criteria from the American College of Rheumatology, 91% satisfied the criteria for fibromyalgia (Fibromyalgia Severity score ?13 and pain ?3 months).
Half of participants endorsed that fibromyalgia had mildly to moderately damaged relationship(s) with their spouse(s)/partner(s) or contributed to a break-up with a spouse or partner.
Half of participants scored as not being satisfied with their current spouse/partner relationship, with satisfaction negatively affected by the presence of mood disturbance symptoms and higher fibromyalgia severity.
To someone with fibromyalgia or to family members this seems like an obvious study, but sometimes the obvious needs to be pointed out before anyone looks into it. People do studies on the workplace because that affects the financial bottom line, insurance companies, the economy and important factors like that which govern statistics that make the world go round. Whether or not a marriage, a friendship or a family member is affected or a relationship harmed by this syndrome does not rank up their in importance even though it has a significant affect on the individual and the family unit. Obviously this is not necessarily the case; we are just talking about a large, rather consistent stressor. One that is difficult on the individual. One that is difficult on a significant other. Together that can cause a conflict or at the very least a lack of acknowledgement of both sides of how difficult it is on both parties. Chronic illnesses are not isolated events which affect individual bodies; they are illnesses that affect individuals and relationships of all kinds. People can sometimes understand and give a great amount of assistance and sympathy for a disease that is curable and short in duration but struggle with one that has no end date, where they no longer know how to respond, how to help the person they have a relationship with or what to do say about it. It creates a tension and the person who suffers from the illness may believe the family member, friend, loved one does not care, does not understand or is indifferent to their suffering. Unfortunately sometimes there is no way to breach this gap. However, it is always worth the effort to open communication. To try and inform people about the nature of your disability so they can understand it better because while you have become more informed as you have gone along, they may not understand it at all. While you have learned to cope in various ways, they may not understand your process, your limitations or restrictions and until they do they cannot help engage you within those boundaries. You have to understand while you are affected by your illness, they are affected as well and therefore your relationship to them likewise is affected and must be adapted in some way. Not all friendships will endure. Not every family member will understand. Not every relationship will cope. However, the ones that do are the ones worth the effort because positive, healthy relationships are our support network that are necessary in ways we do not always even acknowledge but certainly when surrounded by negative, critical people we feel the difference. We should therefore try to nourish the good relationships and encourage new ones that are positive.
Things to thing about:
a) See no evil: Sometimes family members or friends will simply pretend there is nothing wrong with you as if by the simple denial it will go away or become less of a problem. They feel helpless to actually do anything about it so they simply believe if they ignore it; it will make it easier for you to ignore it. Yet this apparent disinterest seems like lack of caring and can really make a person feel stressed out like the entire burden is one the to pretend they are ‘all good all the time’. As someone with chronic pain it is important to understand your family does not want to see you in pain and it is frustrating for them to see it and be unable to help. People have different ways of coping with that. Open communication is always quite important.
b) Acknowledgement: In a relationship sometimes we might feel that our partner does not comprehend how difficult it is for us to function and to complete daily activities. Yet we feel guilty if we do not do our share or some part of the routine tasks of the household. When we do them and our partner does not acknowledge the toll it takes on us this can develop into a feeling of isolation and resentment. Likewise our spouse may take on more of the household duties to compensate and feel that we do not acknowledge the extra effort they are putting in. This effort they are willing to put in but takes more energy and time on their part as well. If they bring it up it can make us feel guilty and immediately make us defensive because of that guilt. The need for communication is vital between partners so that resentment does not build up and an argument over these situations does not develop. It is important when communicating with your partner to not be defensive and understand your partner is not blaming you for being ill. They have valid frustrations and feelings and it is important to acknowledge their struggles with them and their extra efforts. Be open to suggestions on ways to accommodate chores and housework in ways that work for you.
c) Hermit: Friendships can be difficult to maintain over a long illness. Friendships are a two way street and when a friend feels they are always the one making plans that you have to postpone or cancel, or you never seem up to socializing or have as much energy to go do the things you once did with them they may feel they are giving all the energy into the friendship. They may feel you no longer have the time for them or they may simply give up on putting all that effort in. Maintaining friendships are great for getting us into the outside world, socializing and preventing that hermit mode of isolation that can increase fatigue and encourage depression. They play a far more vital role in our mood regulation than they perhaps realize. Communicating how much you value spending time spending time with them and how important it is for you to remain connected to them can help prevent that disconnect. You can suggest ways to encourage communication with them on days when you are unable to leave the house or suggest a short home visit instead. Help them understand that small ventures are easier for you to cope with, such a going out for coffee or lunch, rather than large plans that take significant amount of effort, planning and could be prevented depending on pain levels. Remember you can make plans with friends that are more costly to you energy wise and pain wise as long as you plan carefully, pace yourself and give yourself the time to recover afterwards. Positive friends should be encouraged and maintained and they will understand your limitations and restrictions if you explain them. Friends that do not believe the extent of your illness or are a constant negative energy drain however you might want to consider rethinking. People with introverted personalities tend to retreat when they are in pain, stress or depressed and also tend not to have a strong need to be around people or socialize, which makes them more likely to go into hermit mode and decreasing all socialization. It therefore might take a little more effort for an introvert to maintain a friendship however it is well worth the effort to do so.
d) Owning emotions: Family members and loved ones can have a lot of emotions to deal with of their own. Emotions they have a right to. It can be difficult to deal with all these yourself. Some can be simply a matter of a) acknowledgement. But there can be resentment, anger and even more. Then with children it can be even more complicated and difficult. Sometimes it is better to do family therapy for a bit to get all the cards out on the table so everyone can say their own perspective. Once it is all out there it will be a relief and from there a therapist will help in ways to cope with those feelings and how to get through it. You can also find ways to find out what you are capable of doing that might work in your household that would help with your family members and not be detrimental to you.
letters to normals
There are some sites that have Letters to Normals. These are letters to explains chronic pain or firbormyalgia to friends, family or spouses so that they can understand what it feels like a little better. It is something you can have people read or have them check out that might help start a communication between you and them. You can also print of a FM fact sheet from the internet as well. With the facts and one of these letters you have a good way to get a conversation going.
There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Tender or swollen lymph nodes (glands), especiall…
When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons.
I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…