Adapting to Life With Fibromyalgia: Redefining "Normal"
How well have you adapted to the changes that fibromyalgia demands? If you've adapted well, how did you do it?
Researchers actually asked the second question of women with fibromyalgia who managed to adapt without any kind of mental-health counseling. They found some interesting things that might help you to better adapt.
Basically, it broke down to a fairly simple process of realizations and acknowledgements (simple on paper, anyway - not so simple in practice):
- Realizing pain is not normal and help is needed
- After diagnosis, acknowledging there's no cure
- Realizing the need to redefine "normal"
Things that helped women adapt well included:
- Getting a diagnosis
- Social support
- Educating themselves and others
- Self-care (being actively involved in managing symptoms)
Things that hindered adaptation included:
- Struggling to retain pre-pain identity
- Negative impacts on relationships
- Other people not accepting their illness
- Others believing pain is "all in your head"
Where are you in the adaptation process? What has helped or hindered you? What do you need help with? Share your experiences here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum (under Newsletter & Blog Topics).
Suggested Reading:
- What's Going On? A Simple Explanation of Fibromyalgia
- Coping with Fibromyalgia
- Fibromyalgia Fact Sheet
Comments
I think i’m at a pretty good point. It took a lot of research and reading to identify what I had to my own self, after I was dx’d. I talked with my husband and whenever I come across something new regarding the condition, I send him a copy and tell him to read it at his convenience. I am fortunate in that he understand pretty well my symptoms, even if he doesn’t understand the diagnosis. Just after I was dx’d with fibro, I also had a severe injury…so they both robbed me of a normal life. It has been almost 3 yrs. and I am just now getting to the point of acceptance. It’s hard to give up the things I love, but I simply can’t do them anymore. Now, I just do what I can and try to simplify my life.
I was diagnosed with fibromyalgia and migraines about five years ago. I was in the middle of trying to establish a change in career path after going back to school to get a masters degree. My initial reaction, because I have a long history working in a medical field, was to read everything I could about these problems and look for effective treatments.
My symptoms became so severe that my career ended and it has ruined a number of family relationships. My daughter especially has been unable to accept the dramatic changes these disorders have brought to my life.
My focus now is on trying to pace myself and try to decrease the social isolation and accompanying depression that have pervaded my life in the last few years. It is difficult because my frequent migraines are triggered by among other things bright and fluorescent lights. The only place I can totally avoid them is at home.
It has all been difficult but I am trying to find things to do to keep my mind busy.
I agree that these things the researchers found are helpful. However, I’d like to add some thoughts.
1. It’s true that people not believing/understanding about FM is a hindrance, but I think if there are enough people who believe and/or you have a strong enough self concept such people might not have as much effect.
2. I think that life circumstances can also mitigate or enhance coping. For example, for me my finances are a shambles, although I think I have some resources even some people might not have, and my family and some friends have helped me materially. I don’t have people around me to support me, but I’m also not in a negative relationship that makes things worse either. Heck, even the fact that I already had a gym membership (ca. 1/2 mile from me) before I started getting FM and there’s a sauna in my condo complex help with my FM management. So these are all part of the context of one’s life that seem to me could make a big difference too. It’s possible though that the researchers, if they did take these things into account, found that it wasn’t so important.
3. This study, as summarized here, noted that it is helpful to re-adjust your expectations rather than to expect to be able to do what you could before FM. One thing I’d like to say about this is finding the balance between pessimism, realism, and optimism. I think I’m pretty realistic, but sometimes I’ve had people tell me I should be more optimistic. So far I haven’t been too far off, so I think I’m realistic rather than pessimistic, and I think with pessimism there might be more of a tendency to give up and say “why bother…” At some point what some people call optimism, in my opinion, becomes delusional or denial. Sometimes I think people just think they’re being encouraging by trying to be more optimistic with me.
Some of these things are nuanced.
One thing that helps me cope, that might not work with just anyone, depending on your personality, is that when I’m overwhelmed by emotional things, I tend to try to focus on the rational, such as facts, information, etc. Eventually I can deal with the emotional aspects, but to keep living my life with all its responsibilities, I can’t let the emotional aspects of things overwhelm me. So I start with the cerebral, factual things first. Also, after that the emotional elements of coping can be put more in context based on the facts, etc.