When we get sick with CFS & Fibromyalgia, we don’t realize at first how every area of our lives will be affected, including our relationships with others. No one offers us a “how-to” course or “survivor’s guide” tips on dealing with such traumatic changes. We’re just thrown into a situation, completely foreign territory, and learning to navigate through trial and error. Along the way we lose relationships of all kinds: spouses, family and friends, who can’t handle the illnesses.
Those who vowed to stand by us through sickness and in health didn’t believe we were sick. Our own flesh and blood has told us we’re lazy, not trying hard enough and need to get a life. Then the friends you thought would stand by you after you weren’t able to go out and party anymore quit on us.
Change is hard for people to accept and illnesses as complex as CFS & Fibromyalgia are just too overwhelming for people to deal with. But we still have to deal with them and we don’t deserve to lose our health plus many of our relationships to boot.
I think my most traumatic relationship loss after I became sick was the one with my ex-husband. Now I see it as a blessing but at the time I was terribly hurt. I was very sick, scared, and needed my husband and he didn’t believe me. He would repeatedly accuse me of “faking” the CFS & my back problems and had no sympathy or empathy at all. It destroyed our relationship. How can you say you love someone and not have an ounce of empathy during the hard times? That is not love. It’s the same with friendship. Your true friends are the ones who are willing to stand by you even when the party has ended and times get tough. But a lot of people don’t want to be bothered. We’re sick so we’re pre-judged as “drags”, “lazy” and “no fun”. We’re not worth the effort in the eyes of many people out there and it’s sad the world is like that. It’s even sadder yet when it’s the ones closest to us who feel that way.
So how do we survive all of these losses? First, we have to get through the loss of our health, then we have to deal with losing many of the relationships around us. At first, we are hurt, angry and scared of being alone. Many of us were used to full, active lives before becoming ill and weren’t used to spending too much time alone. All of a sudden, we have no one surrounding us. Then I went through a period where I was angry and just didn’t trust anyone at all. Next, I went through a phase where I tried really hard to make friends but was finding that no matter how much people “liked” me, I never fit in. I still never fit in because my life is not anything close to normal and apparently it’s pretty obvious and I always feel like an outsider.
Now I feel like I’ve built up a wall and while I still want to make friends, I am very guarded and I don’t let myself get too close to anyone. This has become my survival mode I guess to protect myself from getting hurt anymore.
In order for relationships to survive CFS & Fibromyalgia, communication is so crucial but it is one of the most difficult things to do. How do you explain illnesses that can’t really be explained? When we do try and communicate, people will take our reasons for why we are physically unable to do things as excuses and that we don’t want to try.
My husband and I have a great relationship most of the time and even our relationship is tested, especially the last several months, because of CFS & Fibromyalgia. Years and years of sickness is hard to accept and when there is no cure, fear makes our spouses react in ways they normally wouldn’t. But we keep talking through it and we work through it and he knows that I’m really sick. The fact that he believes me after what I went through before with my ex-husband means a lot.
Individual therapy, couple counseling and family counseling are also helpful in dealing with feelings and emotions when your illnesses get overwhelming. What I liked about therapy when I went was being able to talk to someone who is objective and isn’t emotionally involved with me or my family. I have felt at therapy it is a lot easier to be completely honest and to get out my true feelings because I’m not worrying about if what I’m saying is going to upset the other person, as I would be if I were venting to a friend or family member.
Please comment and let me know how your relationships have been affected by CFS & Fibromyalgia.
Ther is unfortunately ongoing daily loss with this and most invisible diseases. The grief process for sudden catastrophic single event loss is pretty well described, going back to the work of Kubler-Ross. But what if, as you describe, you suffer a significant loss and before you go through the loss-grief stages you suffer another loss. Then the cycle repeats again and again and again and . . . There is no medical or psychologic or common wisdom to shepherd anyone through that process. We need a lot of understanding so thank you for sharing your story. THe word needs to be spread!
I have met so many people who will treat their significant others like this. They promise in sickness and health, but if they do not SEE a sickness, they assume you are lying and lazy. It is just sad!
I am a partner. I believe my husband and have done everything I can to supppirt him…. but I get NITHING back. He even struggles to talk to me man st days. As much as we vowed in sickness and in health it is so hard to watch someone that you love go through that and shut you and everyone else out. He is deliberately shutting down telationships , even me and our two late teen/early 20s kids. It is destroying our family after all those years of love and effort. We need help! Please don’t just judge spouses and families, they get hurt too!