This is a BLOG written and created by Nikki Albert, who has chronic migraines with aura and fibromyalgia.
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Our relationships and fibromyalgia
A 2013 study (Musculoskeletal Care, November 21, 2012) of 40 multiple choice questions was posted online with the objective to poll a large sample of adults with fibromyalgia 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.
-50% of the responders stated that FM had mildly to moderately damaged their relationship(s) with their partner or contributed to the break-up with a partner.
-50% of responders scored as not being satisfied with their current partner relationship with satisfaction negatively affected by the presence of mood disturbance symptoms and higher FM severity.
-Relationships with children and close friends were also negatively impacted for a substantial minority of the responders.
We know that chronic pain is not just something that we deal with. We know that it impacts our caretakers. We know it impacts those around us. Chronic illnesses are not isolated events which affects individual bodies; they are illnesses that affect individuals and relationships of all kinds We are talking about a long term stressor that is consistent. It is difficult on the individual. It is difficult on the significant other. It can cause some conflict or at the very least a lack of acknowledgement of both side of how difficult it is on both sides.
People can struggle with understanding an illness that has no end date and how to approach the topic, they simply have no idea how to respond or how to help the person they have a relationship with or even what to say about it. This can create a tension from the person with the illness because they may believe the family members, friends or loved ones do not care, are indifferent to their suffering or do not understand what they are going through.
Sometimes there is no way to bridge the gap. Our divorce rate is at 75% after all. However, it is always worth the effort to open communication. To inform those important in your life about your disability, your needs and limitations so they can understand it better. While you have learned to cope in various ways and learned a great deal along the way, they may not understand your process, know what you have learned, know your limitations or restrictions and until they do they cannot help you engage within those boundaries. It also avoids misunderstandings. Hurt feelings and resentments when you turn down events. They will know it is not them, it is your illness.
We also have to understand while we are affected by our illness, so are they and therefore our relationships to them are affected and must adapt. Not all friendships endure. We know that. Not every family member will get it. Not every relationship will cope. However, the ones that do are the ones worth the effort because positive, healthy relationships are our support system and are necessary. We should nourish those good relationships, appreciate them and acknowledge them.
THINGS TO THING ABOUT:
a)Blind to it: Sometimes family and friends will cope by simply pretending there is nothing wrong with you, as if by that simple denial it will go away or become less of an issue. They likely feel helpless to actually do anything about it so they want to believe if they ignore it, it will make it easier on you and for you to ignore it. Yet it is this apparent disinterest that seems like lack of caring and can really be hurtful and also it is very stressful since the entire burden is on you to pretend you are ‘all good all of the time’.It is very difficult for family to see someone they love suffer knowing they cannot help them. People have different ways of coping with that. Open communication is always quite important. If you state clearly what you need then they will understand what they can do.
b)Acknowledgement: There are times with chronic pain we feel our partner doesn’t get how difficult it is for us to function and do daily activities. Yet we feel guilty if we do not do our share. Or some of the routine tasks of the household. When we do them and our partner doesn’t acknowledge the toll it takes on us this can develop into a feeling of isolation and resentment. More so if they asked why didn’t we do More? Likewise our spouse may have taken on more household duties to compensate for our disability and feel 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. When they bring it up though we could feel immediately guilty and this could make us defensive because of that guilt. Again there is a need for communication between partners so that this resentment doesn’t build up and arguments over these types of situations develop. When having a discussion of this sort it is important to not be defensive and understand that your partner is not blaming you for being ill. It is important to understand they do have valid frustrations and feelings and we should acknowledge their struggles with them and their extra effort. Always be open to ways to compromise in the house. Ways to accommodate chores and housework in ways that work for you.
c)The retreat: Over a long term chronic illness friendships can be difficult to maintain. Friendships are a give and take and when a friend feels they are always the one makings plans and you are always the one postponing or cancelling it can be difficult. They may also see that you never are up for socialising or have much energy to do things spontaneously. They may feel they are the ones giving all the energy maintaining a friendship. They may think you no longer that time for them or they may simply give up on putting all that effort in. Slowly that friendship may begin to drift. Maintaining a friendship is great for getting us into the outside world, for socializing and preventing a retreat into isolation that can increase fatigue and promote depression. They play a vital role in our mood regulation whether you have a one or many friends. Whether you socialize infrequently, rarely or a lot. It is a good thing to communicate to your friends how much you value spending time with them and how important it is to you to remain connected to them. People like to feel that they are wanted around. On days when you are unable to leave the house you can encourage communication with them by other means of offer a sort house visit for tea. Help them understand that short, small ventures are easier to cope with; something along the lines of going to lunch or coffee. Whereas large plans that require significant time, travel and planning often are a lot more difficult and depend on health and 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.
d)Owning emotions: Family members, friends 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 for us to deal with these at times. Sometimes it can be a simple matter of acknowledgment. However, there can resentment, anger and even more. When it comes to a family dynamic with children involves sometimes family therapy can help out. Once it is all out there it can be a real relief and from there a therapist will help in any way they can for coping with those feelings and how to deal with the issues that come up.
Letters to normals
Letters to normal are letters that explain chronic pain or fibromyalgia to friends, family or partners so that they might better understand what we are going through. They can be used to help with communicating with people. Then in addition to something like this you can also print of a FM fact sheet from the net.
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…