I've wanted to be a lot of things in my life, and chief among them was always "independent." I had achieved that, and had really proved it to myself when I got divorced 10 years ago -- I was able to move into my own place, quickly pay my way out from under a mountain of debt, and put my life back together largely on my own. After I re-married, I was proud of knowing that I was a capable person and would be able to fend for myself if need be. Fibromyalgia changed that for me, and that's been hard to accept.
First, I lost my ability to take care of myself, my children and my home. I simply couldn't do all of it, even on the best of days, and on some days I could hardly get myself in and out of the bathtub. Then I lost my financial independence, when I had to leave my job as a TV news producer. I've been fortunate enough to work from home and keep us from losing everything we've worked for, but if I were on my own tomorrow, I'd be in big trouble.
I'm also lucky to be confident in my marriage, so I don't fear losing my husbands support -- emotional or financial. But that doesn't mean I'm OK with being utterly dependent on him.
Chronic illness is a big blow to everything about your life and who you are, and it hits your pride especially hard. You have to face the fact that you can't do what you used to do, you can't be who you used to be, you can't overcome everything by just pushing harder. I've been coming to terms with this for 3.5 years now, and while I've made some strides it's still a struggle.
The first thing I had to do was to accept that this is now my reality: I'm sick, I might be sick forever, and I have limitations. Then, I had to start measuring things by my own yardstick, not someone else's. My house doesn't need to be clean enough for my mother -- it needs to be clean enough for me. Then, I had to shorten my yardstick (is there such as thing as a half-yardstick?) My former standards were destroying my life, so I had to lower them.
Does any of this get me closer to independence? Not really. What it has done, though, is to give me a new perspective on my accomplishments. When I get my house clean, by my revised standards, I feel more capable. When I can actually host a successful party, I feel really proud -- even though it takes me 3 weeks to prepare and 3 days of near-continuous sleep to recover. I still have goals, and I can still reach them. It feels good. Now I can say, "Look what I did, even though I'm sick!"
How has your loss of independence impacted you? What has helped you deal with that? Where are you in the process? Leave your comments below!
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Growing up, I had so many dreams about what I wanted to be — and the talent, smarts, and work ethic to match. Everyone was sure I was going to do something big. Then I got sick the end of my junior year of high school. I didn’t get better. Teachers, family, and “friends” who should have known better thought I had suddenly become lazy and was just malingering. I felt like I was dying.
My senior year, years still before I had a diagnosis, I met my future husband. He believed me. He wanted to help me (and I wanted to help him — he was a bit of a nerd). We got married soon after high school and, though we’ve had ups and downs, we’re still a great team and neither of us know what we’d do without each other.
For the first few years of our marriage I felt like I just didn’t measure up. I could see how others judged me, even “knowing” my situation. I judged myself, too. I felt like such a failure as a wife. He, in turn, felt like a failure for not fixing me, even after we got a diagnosis.
We’re doing better now, though. My health still sucks, but we’ve changed our definitions of success and I think that’s the better. We both appreciate each other and feel appreciated. And, while I may be dependent on him for a lot of things, I realize now how dependent he is on me, too.
I really liked this article, Adrienne, and also the comment by Liz, so thank you for those.
I recall reading that CFS often hits over-achievers, so on the one hand, it forces a realignment of priorities, sometimes maybe even for good, but acutely difficult to deal with for those of us who like to plunge into work (and at least not be viewed as someone who is averse to work).
I think not being independent is one of the hardest things to deal with. If you have children, there’s also the desire to convey a work ethic and a more engaging personality which has been long buried under the rubble of the towers of our health falling down on top of it.
Along similar psycho-social side-effect lines, I’d be interested to see research and experiences other people may have had about not being able to muster emotional energy–whether it is to be adequately warm and genuinely smile in front of new acquaintances (and avoid the reciprocal burden of being seen as aloof, grumpy, or dry), whether to summon moral energy to affirm someone needing small comfort spoken to them (e.g., even just mmhmm’s) or finding energy to speak up against or otherwise respond to someone saying something mildly hurtful or destructive, or whether to find comfort in meeting good old friends who knew the “real you” before your illness struck and can still see it in you.
I don’t know how common this is with chronic fatigue because I don’t see it discussed as often as concentration problems ala “brain fog”, etc., or physical fatigue, but I think it can be as debilitating or more so.
An alternate experience: I was severely depressed from childhood, so I never had much ‘pride’ in myself or ability to hold a job. While physically healthy, I went from working for several months (exhausting myself by keeping up the pretense that I was ‘ok’ emotionally), and then the depression would over-take me and I’d quit and go back on welfare. I tried everything for depression, was even hospitalized and in long-term treatment programs, as well as on every anti-depressant there was.
I finally started to get a little better emotionally, and fibromyalgia struck in 2003. My physical health has decline (CFS developed gradually since then) while my emotional health continues to recover, thanks to some very hard self-therapy and finding the right therapist two years ago. My confidence is actually higher now than it has ever been in my entire life. Despite the fact that I can’t clean my apartment or take more than a ten minute walk without suffering post-exertional malaise, I now feel capable – of making a difference in the lives of others through my volunteer work with an ME/CFS organization, through my blog and other social media activities. I’ve gained major confidence in the fact that people enjoy my writing and want to hear what I have to say.
I guess my point is that when life gives throws you a hurdle you can’t climb over (like with chronic illness), you can find a way to go around it. You can be productive while laying in bed with a laptop these days. You can do meaningful work and be rewarded. Adrienne, I guess you of all people know this already!!
A very well written article…..very good.
This is a very difficult subject to talk about. I have not become dependent but I have really reduced my expectations. I am a fortunate one that I can still work..though the economic downturn has not been good. I write reports and work from home. Sometime is it kind of pathetic to write a few sentences and then have to rest.
If not for my specific former job experience and the Internet, I do not know what I would have done.
This article offers new hope for me. I am surrounded by people that think I am lazy and it is pushing my esteem lower because I already beat myself up pretty bad and the external stressors of others expectations are aggravating, to say the least.
I have always prided myself on my intelligence– fibromyalgia is slowly trying to take it from me. I stared for five minutes at the word “own” and it made no sense to me that the word should be spelled that way ! I have days when I know as soon as I open my eyes it is not going to be a good day. I try really hard to have a positive outlook but it gets tough when your body feels as if you’ve been run over by a convoy of 18 wheelers and smacked in the face with a brick. The physical pain ( as sad as this may seem ) isn’t as horrible as the fibrofog. I LOATHE not being able to think with clarity and I want to ( and I have) sat in my room and cried myself to sleep.
This article helped me see that while I may have to deal with this for the rest of my life, I can and should make changes so everything isn’t so overwhelming.
Thanks!
I can relate to you experiences and have been fortunate enough to learn skills about having “reasonable expectations” of myself and others. I always considered myself independent, but know that life whether you are able bodied or not is best when we have healthy “interdependence” with others. I have friends over who don’t mind that there is clutter or dirt. I have one friend who recently divorced and likes to clean for therapy. I also stopped making myself clean before people came over to help me clean (how neurotic I was!!). I also decided that I no longer want my parents to come from out of town to help me with basic house work- they are “super speedy” and out of inappropriate guilt I have tried to keep up and have wound up in bed for a week and become further behind than I would have if I had not had any help at all!!
I was unable to complete my graduate education due to the severity of my FM/CFS and that was a huge blow that I am still recovering from I am trying to find contentment by changing my goals and finding new heroes
I agree about what an excellent article this was. I know that when my fibro was really acting up (it has been quiet for 16 1/2 months) it was very hard to do household chores. As a result sometimes some of them would go about 2 weeks before I did them again. Because of this it drove my mom crazy because I wanted to do them since they had to be done but couldn’t.
Well, now since my fibro has been quiet I am able to do everything. Of course, I still have to respect my limits because I don’t want to mess up all the work I have done to get this far.
But I know now that if my fibro should act up again at any time that I must work to contro lit instead of the other way around although that can be hard at times.
I wouldn’t say I was an overachiever; however, I’ve never liked asking for help. What has taken away my independence more than anything is Medicare. You see, Medicare doesn’t pay for transportation services. Medicaid did. I could call People for People transportation services to arrange transportation to out of town medical appointments, when I had full Medicaid. With Medicare, I have to find my own transportation. There have been so many appointments that I’ve had to cancel and reschedule because I couldn’t find a ride. It has taken away some of my independence.
Having Chronic Fatigue for 25 years has been a big interference with my life. There were (and are) times when I couldn’t go to weddings, funerals, holiday celebrations, work on a continual basis, enjoy family times when my kids were growing up, go see my mother in the nursing home, check in on my dad who lives alone, clean up my house, cook nice meals, etc., etc. I truly hope they find a cure, let alone a real blood test/diagnosis to help us all out. God bless my fellow sufferers.
Its hideous, but I am so relieved I am not the only one with these limitations. I’ve had fibro (and probably CFS, never diagnosed) for six years. I’ve found a number of ways to have more energy and a sharper mind, and I’m grateful. But I’m so blasted tired of being sick and tired. The economy robbed me of a job I loved, and at a salary I could live on by myself, if need be. Now I make 1/3 of what I used to, at twice the physical effort. At least I’m still working, and able to, thank God. Good luck, and be well, all of us!
Great article and wonderful comments. I don’t want to sound cruel but it makes me feel good that I am not alone with the Fibro & Chronic fatigue. I truly do not wish this onl anyone but to read everyones comments lets me know once again that I am not alone in this battle. I have had CFS for about 10 yrs and was in a really bad car accident close to 7 yrs ago now which brought on the Fibro. Not long after the car accident I was having so much pain, stiffness, I couldn’t move at times, etc. I would keep going to the Dr and would keep getting no real diagnosis and felt like pulling my hair out because I knew my pain was real. The Dr ran some tests and they came back fine so she kind of made up things like oncoming arthritis or bursitis, etc. So I just accepted that this must be what was going on with me until a friend of mine called one evening telling me she was with a friend of hers who was talking about a friend who had this syndrome that she had been in pain with for years and finally was diagnosed with it, Fibromyalgia. They got to talking about the symptoms and my friend was like gosh this sounds like my friend, came home, told me about this, I looked it up on the computer and almost fell out of my chair. There in front of me for the first time in 2 yrs was everything that was wrong with me and going on with me. I could not believe it. I called the Dr office, made an appt, printed out what I was reading and took it with me to the appt. The Dr was still not convinced when I showed her the print out and I wanted to kick her and scream at her and tell her that this was it. I finally told her that this was what I felt like doing and I knew this is what I had. She finally sent me to a rheumatalogist and I was finally told I had Fibromyalgia. Like I said in a few weeks it will be 7 years and I am still in pain but I am learning so much. I was laid off from my job Sept 08 and my Fibro support group encouraged me to file for SS disability and I finally did about 4 months later. After being off so many months I started cooking for myself daily and for the first time in close to 6 yrs I started actually cleaning the house. That was a miracle.
The best thing I have learned is the pacing concept. I still don’t have it down by any means but I try to work at it. I am a Type A person and am used to going all the time. Used to starting something and following through until I am finished. I don’t stop and let soemthing take me days to do, that just isn’t the person I am, but guess what??? I am now. I take a kitchen timer with me and just set it for however long I think my body has and make myself take a break for 10 mins to 1 hour if needed. I have been working on getting my basement/rec room “spring cleaned” and it has taken me 1 year. Can you imagine? I would have had that done in 1 day in the past. Yes my life has changed. I don’t go out like I did, I don’t have the energy. My friends have gone their own way for the most part but those who truly matter are still close to me and help me always and that is a true gift. I know they don’t really understand what is going on with me but they have seen this outgoing, active, vibrant person change to one who is in pain, doesn’t go out much, who did not clean the house pretty much at all, but who always did smile and keep going no matter what. I am a true believer of making lemonade out of the lemons. I still have days of pain so bad that I literally make myself get out of bed, but I do so with a smile, as much peace in my heart as I can muster, and gratitude that I can at least to this.
I have to be dependent on my parents and I hate it. I had depression and hypothyroidism before the fibro hit. I had to raise 3 kids on my own. My husband left because of the depression and hypothroidism.
I feel like a failure. I have to live with my parents. I need things I can’t afford. I do work full time but my job doesn’t pay that much. I can’t work a second job. My car is falling apart and I can’t afford a new one.
I feel I failed my children and I let my mother be more of a parent than I was.
I have lowered my expectations, but that is hard because the world is a go go go, buy buy buy world. I don’t feel like I fit in.
My family doesn’t understand my illnesses.
I’m looking for a parnter, but don’t think I will ever find a man who will understand.
I feel very alone in this world.
It seems like we are all in different places with our illnesses. I was, like many on here, an over-achiever, a perfectionist. I have had symptoms of FM and CFS for over 10 years, but was diagnosed last year. It was hard to accept that I could no longer work. I agree that loss of brain function can be worse than physical pain. I can’t spell simple words sometimes. I used to manage millions of dollars, but have a hard time keeping up with my own expenses now. My husband has been a wonderful supporter, and some of my family is. Many friends support me, especially ones I have made because we have the same illnesses. I have always been a hard worker and never thought of myself as lazy, just stressed before diagnosis. I don’t know what others think, but I have come to the conclusion that I will give every day my best effort. I will wake up grateful and try to live a life of peace. I am adjusting to my new self, and often embrace it because I am able to spend more time with my kids than I did before because I was always working. Each person has to find that peace, to be able to say, “I may no longer be able to do what I used to do, but I will make the best of things. I will find a silver lining.” I have learned that is not a defeatist attitude, but a realistic one. And my abilities may change day to day. I have learned to not care about what everyone else thinks. They don’t understand, and if they give off negative vibrations, I don’t spend time with them. Feel-good time is precious, to be spent on what matters. I am flaring so very much today, by the way. But I am grateful still and remember that God will take care of me, my family, our finances and make sure we have what we need. My spiritual life has been my saving grace along with a few key people in my life. Each person needs to find their peace. It doesn’t make you better, but it does make you acceptant, realistic, and so very grateful for every single pain-free moment. Bless all co-sufferers out there! I hope you will each find your peace if you have not already.
An alernative to being totally dependent? In 2008, I was forced to leave a job I loved. I went through a serious illness followed by chemotherapy. Chemo left me with several physical conditions. Two of which are CFS and Fibromyalgia. I had worked my entire life since the age of 15, even while completed my degree. My parents instilled in me a strong work ethic which I carried throughout my career. Despite by my best efforts to stay at my job, I realized that management was out, it was just too stressful and taxing on my physical strength. Thus, I went out on disability. Having worked for so many years, I would get up in the morning and have nothing to motivate me to be a productive member of society. I also became very worried about how I would support myself financially. I finally got up enough courage to go to my state vocational rehab agency. I hooked up with a great counselor who explained the Ticket to Work Program (http://www.yourtickettowork.com) and how working part time would not affect by Social Security Disability benefits. From there I found out about JLodge, an employer, who only hires disabled individuals who want to work part time from home. I recently started working for JLodge.
JLodge was founded in 1999. Since that time, JLodge has become an industry leader for employing college educated, physically disabled individuals who are productive, motivated, and loyal.
I wanted to share all of this with those of you who might be facing the same situation. If you are want to find more information about available positions, please go to their website: jlodge.com.
I’m so grateful to have found your column. You’ve no idea. I have been dealing with chronic, pain & fatigue & brain fog and all of the many things you write about in this column since 2003. And EVERYTHING you mention above is my life –minus the husband and children. I ADORED my independence. Losing it has been devastating; the worst part, I am isolated because no matter how I try to reach out to others, they do not understand and so my time is spent alone. For me, right now, this is the most difficult thing about it.
How do I cope? I too have to constantly readjust my expectations and redefine my accomplishments. I always run out of time. Time seems to fly by and I can never keep pace, so I do things little by little. For example, since being in bed so much, I learned to knit. (YouTube helps refresh my memory when i all of a sudden forget how to knit.) I have been working on a babay blanket for a coworker for 5 months. Many times I wanted to give up, but it is a big beautiful blanket now and I am proud. Like you I was in a high stress, deadline oriented career that I LOVED. I had to let that go. Deadlines, which I never ever missed a day in my life, are something I cannot deal with now. I have to make my own deadlines and readjust them. I have to have infinite patience with myself.
Again, thank you for this column.
I am new to this online writing but i know it is supportive for us all.
I, too have FM, arthritis etc. I have been reading some of your comments. You all have your challenges as i do. It is not easy facing life with physical pain and limitations.
I think we are coping as best we can.
Good Luck to all of us
oreo88