Last night I read a question in an email by Jennifer Louden that really struck me. “In what way have I been living in the shadows in 2011?” Basically, what have I been hiding or afraid to expose about myself?
My first thought was, “Nothing.” Yeah, right. So, I thought harder. And what I quickly had to admit was that I have been hiding a pretty significant fact…how sick I really am. Yep, I talk a lot about having fibromyalgia and chronic fatigue syndrome, but when it comes right down to it, when I am around people or even on the phone, I act like I am doing much better than I truly am. Then I pay like hell when I am behind closed doors with just my hubby and my dogs.
I think some amount of “bucking up” when you are around people is normal and we all do it. However, I know that I probably go the extra mile. Why? I don’t think I feel safe letting others see how ill I really am. I am afraid they wouldn’t like me if they saw the “real” me. If they knew the truth.
Illness has been with me my entire life. I have some symptoms of my current illnesses going all the way back to grade school. I also have memories going back that far of being called a hypochondriac. I grokked by junior high school that my life was easier if I just hid my symptoms. And that is what I did. Unless it was serious enough to scare me into saying something to my parents, I just kept it to myself.
The second half of the question was this, ”How might my life change if I came out into the light in 2012? What strengths could I discover and share if I gave up hiding my weaknesses?
I can think of a number of ways that my life would improve if I stopped pretending to feel better than I do.
- It would help me stop the push/crash pattern I have been living with.
- It would allow me to admit when I am tired and ask for help instead of soldiering through.
- I think when we hide any one part of ourselves, we also hide other parts without intending too. I could be more authentically me if I stopped hiding how ill I am.
- It might allow others around me to admit how they are really feeling and that they too need to stop and rest.
Mostly I have been thinking that I am doing a real disservice to everyone who has chronic pain and illness and especially fibromyalgia and chronic fatigue syndrome by saying I have these illnesses but then acting like I am more highly functioning than I really am.
Last year, when I developed chronic fatigue syndrome in addition to the fibromyalgia I had had for years, I did admit to the support group I lead that I couldn’t do all that I had been doing. They were incredibly understanding and encouraging. But my lifelong “programming” kicked in and I promptly went back to doing and overdoing during the group meetings just as I always had.
I need to be more congruent with what I say and do or I am not being fair to myself or to anyone else who has these illnesses. Therefore, in 2012 I am going to do my best to be more honest about how I am really feeling and not try to cover the extent of my pain and fatigue when I am face to face with someone or talking on the telephone. This won’t be easy, I know. I do think the benefits of making the change will be well worth it.
{ 19 comments… read them below or add one }
I think you hit the nail on the head. Until we are ready to admit to ourselves that we cannot do it all we are being untrue. We hide just to survive. That’s not living.
No, hiding isn’t living. It is really being fake, isn’t it. No matter our reasons. It is still not being authentically ourselves.
Thank you for the honesty in your blog. I push too hard almost evey day and my cycle of crashing and pushing is not healthy and also not good for my personal life. I have a question for you and the other readers. How and when do you tell your family, friends, associates, co-workers etc that you have this “illness” that no one can see? and of course, I “look” ok but most of the time I am pushing my limits. Can anyone give advice on how to tell people about it? I’m not worried about acceptance, more I’m worried about how to explain CFS trying to explain what “exhausted” really feels like. Thanks in advance for any pointers.
Whew! That is a tough one to answer and I think that line is different for everyone and for each situation. Have you read The Spoon Theory? That might be a good article to keep handy for explaining the fatigue to people. It really is something that is very difficult for someone who has not experienced the level of fatigue we have to grok. When I tell my husband that I am too tired to say another word, he just has to take my word for it because it sounds ridiculous to a healthy person that you could be too tired to say a few words.
As far as when to tell someone, I think with close family it is probably best to be honest pretty early in the game. They deserve to know and if they don’t then you are going to push yourself beyond your limits when you shouldn’t. I guess that is maybe a good rule of thumb for when to tell anyone…they need to know whenever you NOT telling them is going to cause you to be inauthentic and pretend to have energy or feel okay when you really need to be resting and asking for help.
I hope some others will chip in here because I am far from an authority on this subject!
Your honesty is humbling. Yep, I got choked up. Thank you for saying it like it is for yourself. Soldiering through, as you so aptly put it, is true for me too. So many times. Your sharing has prompted me to face, once again, a crossed emotional wire cemented into my being which is believing that my worth is determined by what I do. I cannot tell you how many times I come face-to-face with the shame ridden feelings because I am not working in a job/career. One of my ongoing practices to uncross this untrue belief is writing over and over in my journal – I get my worth from within myself. Part of my journey to wholeness, that’s for sure.
I hear you, Gloria. I think we are a society of “human doings” and we forget that “being” is not only good enough, but perfect! I face that same line all the time. I have tortured myself over not working and being a drain on hubby instead of a resource. Yet he reminds me over and over that my value is not in a paycheck. I read an affirmation exercise by SARK the other day. She was doing the affirmations but they weren’t really working because a little voice in her head was arguing with her affirmation. What she found was that changing the wording to “I get my worth from within myself NOW” made a difference. Difference being that it brought it into the present and grounded it a bit for her. I can actually feel the difference in my being as I repeat it the two different ways. Gloria, I know the value you bring to others and it has nothing to do with your work. It has to do with the lovely, caring, kind and gentle person that you are. That is true value. The other is just money!
I agree completely Tamara! I had a similar “awakening” of sorts myself, during this last year. My nature is to be happy and perky all the time; I have always been this way. However, the older and sicker I get, the harder it is to do and the more fake it feels! It’s not that I’m consciously and intentionally trying to be perky….it’s just second nature. I am a happy person. But Like you, I have been sick since I was a child. There is a stigma that comes with that. I can still remember my childhood doctor telling me that he thought I was made on a Friday that everyone took a vacation day. I too remember that hypochondriac word being thrown around. Why is it that when someone is sick a lot everyone takes to basically blaming that person for it? A child, no less!
I definitely think there is a component of my perky nature that has come from me trying to make
myseld more palatable and pleasant, so that people might like me despite my obvious “flaw” of being constantly sick. Even since this revelation of mine
I can relate! I am usually in a good mood yet I can feel that I “amp” myself up when I am around other people or even on a phone call. That amping takes a lot out of me though and I pay by crashing harder later. That desire to please is so ingrained in us humans and I think those of us with a handicap feel we have to work that much harder to fit in. My guess is that we don’t really. I am betting that people are really liking us for the core of who we are and the “wrapping paper” we throw over the outside is just distraction that they rip off to see the real us anyway. I am not saying it is going to be easy to change our way of being. At least for me, I think I have to. This push and crash is making me worse and I can’t afford to get any worse!
Cont… Even since this revelation I catch myself doing it. I’m not saying I only want to be sad and serious all the time. I just want to be in charge of myself more. If I truly am happy and perky, great! But if not, I want to be able to show it. I am definitely improving in this department!
I’m being much more true to myself. But something you said made me think of it a little differently…..it’s not just ME that I’m doing an injustice to if I just put on a happy face and pretend like everything is peachy! I’m basically teaching everyone that this whole fibro thing really isn’t that big of a deal and that it doesn’t really affect a person’s life that much. SO not what I want to be saying! Thanks for helping me see a bigger picture Tamara. I will try to be a better example of how things really are ;¬)
Nancy
Yes, I really do believe we do ourselves an injustice, but I think we do the community as a whole an injustice. I don’t even think I am fair to the other group members when I act all highly functioning and then the minute I hit the car for the ride home I am in tears. That is not letting everyone see the real face of FMS and ME/CFS. I used a wheelchair on Wednesday to get through the hospital to my endocrinologist’s office. I think that was when this started gelling for me. I am being one person when just my hubby (and people I don’t know) see me and another person around everyone else. That just isn’t right.
Hi Tamara….I love the way u said we are not happy with being human beings but rather try to be doing all the time….I completley agree, I do that amping myself up with different sets of friends and family and the with the people I am most comfortable with (probably the people it most hurts to see me like this)…I had a discussion with my 17 yr old daughter last weekend, I felt like i was having a panic attack and was very upset…she at one stage said…’Mam it could be worse’ and i nearly went bananas….I know what she meant but for me at that moment it couldnt have been any worse…I find it so hard to accept this damn illness. I hate hate hate it!!!!
I know! I hate it, too. I understand how sometimes you feel like you can’t take it another second. But we must. I posted a few weeks ago about Intentional Resting. I have genuinely found this to be helpful. First, you always want to rest for yourself. So, you would say, “I rest for my entire body now.” Then, you could rest for your illness. Just try it next time you feel that panicked feeling. You can repeat the words to yourself. Try saying, “I rest for my illness now” or sometimes it works better to say, “I rest into my illness now.” See if you don’t feel a bit of peace and a little room open up so that you can breathe more freely.
I’m so proud of you! I read this article and think about where you were when we started working together at the beginning of the year… wow. You’ve really come a long way! You might see what your body is doing on the outside, but I’m looking at what’s happening on the inside and I’m impressed. =)
I know that in my case, fibro was a blessing. Sure, it was a pain in the butt – and many other places – but it caused something to grow and change inside that wouldn’t have happened if my body hadn’t forced me to slow down. I see that a bit in you too. While I hate to see you as sick as you are, I rejoice to see the beauty coming from the ashes. <3
Thank you, Tami! You made my day! I agree that as lousy as having chronic fatigue syndrome is, it has taught me a lot this last year. I have learned so much more about myself and who I really am versus the doing, doing, doing me that existed before. I will still be tempted to do and overdo. I think it is just in my nature. But I have also learned the value in slowing down, breathing, taking time for simplicity, compassion and joy. I think for the first time in my life, I might actually like me. Hmmm…I typed that line and then almost deleted it. Then I stopped myself. I think I will leave it be.
I really understand your perspective here Tamara. I “get” what you said 100% But it made me think of something my doctor told me after explaining how my dad wasn’t very understanding when I was first diagnosed with Fibro. She told me that sometimes it’s just best not to talk about certain subjects, especially with family. So while we do discuss how I’ve been lately (on the phone, he lives 7 hrs away by plane), I don’t go into specifics or give many details. At least at first that is how it was.
But my dad, the gem that he is, researched Fibromyalgia online and educated himself about the condition/disease. He may not understand how it is for me, but he has a pretty good idea what the common symptoms are and that it is pain that will never go away. So that’s a good thing.
As for putting on a brave face, I have to agree that honesty is always best. You just don’t have to go into great detail, do ya?
Eventually the nosy busy bodies that are prone to gossip will understand that you aren’t going to elaborate and give them more to gossip about (applies to office/workplace or family).
I stopped worrying about what other ppl think many years ago. All it does is give me grief and more stress. So my motto is Chin Up, Smile On! and keep on keepin on.
How wonderful that when you gave him space, your father did his own research and learned about your illness. I know that must have felt really good.
I totally agree that we cannot worry what others think. I think about something Wayne Dyer says, “What you think of me is none of my business.” All we can control is what we think about ourselves. That is a big enough job for me most days!
I can’t thank you enough for this. I have been in a severe flare for nearly a month that has kept me put of work. It started as a sudden unexplained back injury and turned out to be the mother of all flares… and why? Because I put on the brave face and “do”. Because I say yes, yes, yes at work. Because I pretend to be better Han I am actually feeling. I ran myself into the ground. Yes, fibro helped, but I was dishonest with the world and maybe even myself. I had ready decided that this could be quite a.positive learning experience for me and that I could start being more authentic and not look to my ability to work as validation of being worthy of life… but it didn’t really make sense until I read this. I’m ashamed to rest. Im afraid to tell my boss and family.no. I don’t want.to be a drag. But.more than all that I want to feel.valuable… a d the part about our value.not being a paycheck just settled everything inside me. Thank you for this gift! I rest my body now.
I’ve been ashamed to rest. I don’t want every conversation to revolve around my symptoms of the day.
I think it is interesting that we are desperate to feel valuable and worthy yet we are not valuing ourselves when we don’t honor our limits and say “no” when we need to. I wonder if we then teach others not to value us because we aren’t first valuing ourselves?
I don’t think saying “no” to your boss and family when you are over your limit is being a drag. I think that is being true to yourself. I bet if you asked them, the bigger drag is having you laid up for a month with a bad flare. Believe me, I do the exact same thing. I am so concerned about disappointing people that I overdo, wind up crashing and then can’t do anything at all while I recover.
I am learning that we do ourselves, our families and friends and even our bosses and coworkers a favor by pacing ourselves so that we avoid a bad flare or crash. So don’t be ashamed to rest. That doesn’t mean you have to discuss your illness or symptoms either. You can just simply state that you need to rest. No need to go into details unless you want to.
Please excuse the horrid typing errors.
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