While numerous people, sites and literature discuss CFIDS, I have yet to find many that directly discuss how it affects a relationship on the emotional, physical, financial levels. These are all “normal” parts of relationships that “healthy” couples experience everyday; yet when you have CFIDS / CFS, these daily topics are daunting and often times destructive. YOU ARE NOT ALONE!
In an effort to stay transparent, I am opening up about my personal experiences with this subject in hopes readers may find a way to relate.
Disclaimer: We are all very different people who handle situations uniquely with the skills we have at our disposal. So please tailor these experiences to fit your own.
Couple ways of looking at this: complications in the relationship stem from lack of sex which leads to a lessened emotional connection OR a decreased emotional connection that leads to less/no sex. Either way, you are here…reading this article.
If you take out the description of the disease (CFIDS) and tell someone a story about the emotional struggles someone is having because they have _____________ <insert recognizable disease name>, they would nod their head and imply understanding or sympathy. So why would it be any different describing the emotional stressors CFIDS causes? Seems logical, right?
When you are battling a bout of CFIDS, your physical mobility/capabilities decrease significantly. For a previously active person like myself, this meant elimination of the things that I love, and by definition, encompass who I am: hiking, horseback riding, camping, rock climbing, boxing, etc etc. Without those activities in my life I was left questioning who I was or what defined this new immobile version of me. Having questions of identity and future abilities inside oneself is hard enough, let alone trying to explain it to a partner.
The biggest pieces of information I have learned (the hard way) are:
3) BE PATIENT
1) Communication is important on BOTH sides. For the patient, being able to find words to describe your emotional and physical state is paramount. And believe me, I KNOW this is easier said than done. In my experience, I was mostly angry, in pain, frustrated, depressed or in grieving mode so my communication reflected that. I often snapped, was rude or outright mean to people I care about when I didn’t realize it. It took a long time for me to find the words to be able to speak with compassion to my friends/family/partner. Once I learned how to speak with love, my words we received much better. I was able to explain my physical ailments, my emotional state and express what I needed from my partner.
One of the hardest thing to communicate was my lack of sexual drive. Keeping it welled up inside eventually made me resentful and resulted in me feeling overly self conscious about things. Not having the desire to have a sexual relationship wasn’t coming from my heart, it was a chemical imbalance my body was experiencing. Once I realized that it wasn’t something I was controlling, I was able to communicate to my partner that “it wasn’t them.” Info on low sex drive and women’s hormones.
On the other side of the relationship, your partner needs to communicate their concerns, questions, apprehension or positivity as well. And be open to that! Allow them to have a non-confrontational conversation with you that you are not taking a defensive position about CFIDS. If you immediately snap at their attempt to communicate, their willingness to do so in the future may lessen.
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