If you didn’t know me well, you might assume that I’m faking being sick. I may just look tired, but you wouldn’t know that I’m in constant pain every day. Some days are worse than others, but even then, I act like I’m fine.
It’s much easier to fake being well, because then I don’t have to defend myself. I don’t have to justify my unrelenting fatigue. I don’t have to explain why I’m not exercising. My desire is to actually BE well, but that’s not my current reality.
I’m not sure why I feel that I have to pretend to be well when I am anything but. Why is it that we allow others’ opinions of us to matter so much? I’m not sure. We always seem to be developing our acting skills for a role we never asked to play. It’s just crazy.
I try not to get caught up in the fact that so many people I see, especially on social media, appear to have it all together. It does seem so unfair at times. But then I remember that they have their own challenges. Perhaps they are faking at having a loving marriage, or being content with being alone, or that they seem to have no financial worries. We are all struggling with something.
I try to be gracious when people ask me how I’m feeling. That’s a question that’s pregnant with possible responses. But I stick with a generic, but not necessarily honest, response. I might say “I’m doing better today,” or “I’m doing OK,” or “It’s been a pretty good week.” Or I may deflect the question back to them.
What I really want to say is “I’m in a lot of pain; thanks for asking,” or “I’ve been fighting a brutal headache for days,” or “It’s been the week from hell.”
I’m trying to find a balance between honesty and grace. My goal is to stop faking being well and just be the real me, pain and struggles and all, and to extend grace to those who just don’t understand. It’s not their fault that they don’t understand.
Do you struggle with faking to be well? How would you like to change that?
Wow, this hit the nail on the head.
Thank you John! ??
Robin may I ask you a question,guess I’m going to ask anyway,lol.
Do you have or any of your readers have an opinion on the use of medical marijuana?
I live in Oklahoma where it is a no-no.
We recently made a trip to co. Of course I had to try it the marijuana They could not sell me the medical version but I requested from the kind lady behind the counter what is most used for FM,chronic pain. I’m 50 with 3 low back surgeries,neck fusion,FM for 7 years now,and an artificial hip a hip that’s had 5 surgeries. I take 40mg methadone,30mg norroco,16mg zanaflex,475 mg. Lyrica, every day,along with an injection in my neck about every 4 months,been doing this for 12 years plus now.
So I smoked this ” grape god ” the first 2 drags I felt my entire bodies pain just slip away,after the 4 drag I had to put it out.
We spent 10 days there in Co. 7 of those days I only needed 2 norroco,2 lyrica. We were out sight seeing everyday,horseback riding trip one day. I had 2 teen granddaughters with me as well. I never let them see granny smoking weed even though I was within the law at the time. Since then I have done as much research on the subject as I could find. So I was curious if any readers may of had similar experiences or if they are in a legal state and use it how has it affected them,and I would value your opinion as well. Thank you.
Sarah, I don’t have personal experience with it, but some of our readers might. I have a good friend in the UK that swears by CBD oil.
I like that perspective and it is so true. I pretend to be well everyday because I don’t want to lose my job. I have been in pain for 16 years 24/7 everywhere and those are the good days. Bad days are unbelievable. My headaches make it hard to think and sometimes hard to even keep my eyes open but I push on. My girlfriend doesn’t want to hear I don’t feel well, she just says don’t bother saying anything since I always feel horrible. That doesn’t help either. I have been toying with the idea of vaping CBD oil. Just delaying it due to the stigma. But I hear so much talk that it really helps.
Hmm Jack, maybe she’s not the right girl for you. My husband always wants to know how I’m feeling and how he can serve me. If you try the CBD oil, make sure you let us know how it works for you.. ?
I’m 48 years old, and the medical marijuana really helps me. It’s not mine, but when I’m having a particularly difficult time sleeping because of pain, a couple of hits of predominantly THC, and the pain is gone. GONE! It works for me every time, so I may talk to my daughter’s doctor about it and get my own. I don’t use it often, just on those just-can’t-get-through-it nights. I recommend it for sure.
Inga, that’s great that you found something that gives you relief!
Thought I’d briefly chime in – I’ve had a FM dx for around six months and just started experimenting with vaping (OR resident, recreational just became legal). I’ve found so far (and I’ve only used it a handful of times over the past ten-ish days) that it helps with pain and anxiety. In comparison to meds, it feels promising. A lot of research to do still, and I don’t know how long it’ll take to find the best method/strains (high CBD vs closer to equal CBD:THC, etc.) for various things, but I’m favorable toward it. If any of that helps. 🙂
I have arthritis as well as the fibromyalgia. I also have anxiety and depression. Medical marijuana is great for me. Yes, it takes time to figure out what works for you. For me, all of them give me some vertigo, and since I always have some vertigo, I take it only at bedtime with my walker at hand.
you might want to look into CBD extracts…have same effects as MJ, without the “stoned” feeling. I personally have been using the CBD extracts since Dec. 2015, as of Jan.1, 2016, off all pain meds…ie..tramadol, meloxicam, toradol, percocet, vicodin, oxy, flexeril, and methocarbamol
Tina call me 484-862-8273
Sarah,
I’m a 62-year-old fibromyalgia patient. It took a lot of convincing by my doctors to get me to try marijuana. I’m in California so it’s completely legal for medical or recreational use. I have drops that go under my tongue, both in just CBD (pain management only), and also 50-50 of CBD/THC. I use the CBD during the day because it has no narcotic affect, I use the 50-50 at night which helps me sleep. I also have a CBD patch that you put on close to the area that is hurting you the most. All of that works well.
I was the most skeptical person ever, because marijuana was just not part of my world. Once I tried it I realized it really does help. I have asthma so I can’t smoke but the liquids, and patches help a great deal. I feel bad for the people that can’t get it, because it would help them, but they’re in the wrong states. I don’t know the laws on being able to buy it in one state and transport it to their home state, probably something in the range of drug trafficking. Petition your legislature to get the law changed, so you can get what you need.
Good luck I hope you’re able to figure a way around everything. Jennifer
People dont understand.I drove an 18wheeler for 40yrs. In january 2016 my neck locked extremely painful Then symtoms symptoms started Then im involved in a tractor trailer wreck- totaled upside down twisted.sympoms went crazy .one year later im total disabled going thru cervivsl nerve ablations and so much more because there is an unknow black growth on t-8 vertabrae inside the spinal column So yes i understand it all and God have mercy on us to just hang on!lark
I have had fybromyalgia now for about 25yrs the trouble is there is no cure only different pain remedies i have been researching as much as it can .The only time i don’t have pain is if the doctor gives me steroids but only for a short period of time as it can damage your kidneys that’s if you can find a doctor to let you have them .So i researched different herbs to try there are so many different kind of remedy’s i tried them over a period of weeks as any herbal remedy takes at least 4weeks to get into the system the one i found to help with fog was taking magnesium tablets and apple cider vinegar capsules and have to say i have not had a fog since i have researched that tummeric capsules are the nearest herb that has an antiinflammatory near to a steroid tablet that you can get as you can not take these if you taking steroids i have only started these the last couple of days so watch this space .Cbd hemp oil does take the edge off the pain the only trouble is you don’t only buy 0.2pc that is legal it is the pure cbd oil that stops pain as cbd you cannot get high on or addicted only THC which is marruanais what gets you high and the only way you can get pure cbd oil is if you make your own as it’s called medical marijuana in America and some states it is not against the law so start planting that’s all i can say!!!!!!!!!!!!!!!!!
This is perfect. Never even thought of putting into that context. Maybe “they’ll” finally get it! Thanks!
Wow, this article was great. Love the title. I can identify with every thing you say. I do this every day and never really thought about it this way. I try very hard not to let anyone know how badly I really feel. (Pain, fatigue)
And how cleverly put. Thank you.
Janet thank you for your kind words ?
Great article. Yes, it’s a daily struggle and I totally agree with your theory on it. You get to the point were you don’t want to be looked at as a ‘Debbie Downer’. I pretend to be well, believe me on that one, I should have an Oscar for the role I’ve played this long. I’ve lost friends because I have to cancel plans because I can never predict how I will feel from day to day. For most of us with invisible illness it’s easy for others to forget about our limitations, especially when we push ourselves so hard to be normal, all most people want in their lives is to have some sense of normalcy. With Fibromyalgia that is often just a fantasy. For me I think I’ve pushed myself harder than someone well because I would rather do that than be bedridden at 39. I’m hopeful that one day we will all be well and live the lives we dream about having.
I am hopeful too Sandra! I’m thinking we should all get an Oscar for the role we pay to keep a positive spin on things.
what u have said above could be me talking my response is oh not to bad thanks because really people don’t want you to say no I’m in angony today or yes today I managed to go to a shop for a bit I’m on strong medication including morphine saw USA study that stated that in some patients cortosion injections have helped my GP and pain clinic at hospital will not even give me 1 injection to see if it may help whilst meducation is killing me and my insides I am then told but we are not happy with you taking the amount of tablets you do I am even more depressed at the lack of any kind of help except I need to see a physciretist because I feel down well it’s not really a surprise when no one will listen in UK once you have been stamped with the FB label don’t expect any help because u won’t get it
Wendy, I’m so sorry to hear that, how completely frustrating! I wonder if any of these functional medicine practitioners are near you? Functional medicine practitioners in the UK
Wendy, I’m not sure if you meant Psychiatrist or Physiatrist. If they told you to see a Physiatrist, that would be a doctor of Physical Medicine. I’ve had fibro for 30 years and have been treated by Physiatrists, who have helped me with pain medication, physical therapy and injections. So if they’re recommending a Physiatrist that might very well help you. If they’re sending you to a Psychiatrist, they think it’s all in your head. A lot of people mix up the names because they’re so similar. I hope I don’t sound condescending, but the first time I was recommended to this kind of doctor they explained very carefully the difference so that I would know they weren’t trying to fob me off as having mental issues rather than a physical problem.
I would like to thrive rather than survive. It would be fun to do all the traveling and exploration that I daydream about…if only I could walk very far. I just say I can’t go when I’m invited to some wonderful location. And I’m sure all of you know the reasons for saying no. If away for very long I wouldn’t be able to hold onto faking wellness.
Me too! I agree, if I was away for very long, it would become very apparent how ill I am.
I’ve lost friends for this reason as well. After cancelling or turning down invitations a few times, people stop asking. I would love to have a social life again! Between ruptured lumbar discs, and fibromyalgia, I rarely feel good enough to go out. When I do go somewhere, I usually arrive already in pain, which becomes worse, making conversation quite a challenge. I don’t tell anyone I’m in pain. I try to smile and fake being well and happy. Meeting new people is so hard.. those inevitable questions, “what do you do for a living?” I say I’m retired, which is followed by “wow, that must be great!” Oh yes, it’s wonderful. “So what do you do with all that free time?” And there I am, again, pretending I have a life. Chronic pain is so isolating! I divorced over two years ago. Occasionally I meet men who ask me out, and I turn them down, without trying to explain why. Who wants to date someone that cancels 4 out of 5 dates?
I hope that someday soon there is either a cure, or effective treatment for fibromyalgia. I don’t know how much research is being done on this. When I was first diagnosed, I spent a lot of time online looking at research, and reading books about this disease. At some point it no longer seemed worth the effort.
For me, eating an anti inflammatory diet helps. I still have flares but they’re not as frequent.
Myna, thanks so much for sharing! Changing my diet has also helped my pain levels. I hear your frustrations and I know how difficult it is trying to have even a smidgeon of a social life.
You have totally reflected my reality here. There are only a few people in my life that I tell the truth to. I don’t want to be left behind or whispered about so I lie to most people. But I also often ignore my own truth and tell myself I feel good enough to do things that I really want to do. Sometimes doing things results in increased pain and sickness, other times I surprise myself with how much I could actually do without making things worse. The latter situation seems to occur less often as I get older, but after 20 years of doing this I have a collection of accomplishments and memories I would not have had I given into my truth. So I will continue to fake being well as long as I can, but its for my own self worth. I figure I’m going to hurt either way so I might as well push through and try to find joy. Thank you for another great post.
Karen I totally love your attitude!! ?
Thank you for your words. This is exactly how I feEl and lie everyday and push myself.to the extreme becasue I have a daughter who is only 11 and I have to give her a normal life with a mother that can be there and make memories. Everyday is pain and fatigue but I manage to try and lie to myself and others to just keep going. People just don’t understand that getting out of bed is a challenge. Many blessing to you all and hope you have better days than not.
Christina, I applaud you!! I was parenting tends E when I first got sick, it’s very challenging ?
Spot on Robin! When people ask me how I am doing I want to be honest, but I don’t want to unload my burdens on them – nor do I think they really want to hear that. I think they want to hear that I am doing well or getting better, but unfortunately that is simply not the case. I too probably fake feeling better than I actually am. Most of the time I merely tell them that I have good days and bad days, with the current day being one of the better days (otherwise I wouldn’t even be out of bed and seeing them in some public or social setting).
I guess for many of us with fibro and chronic fatigue it is just a matter of getting by day-to-day, trying to learn what little things even may help us and hoping that some type of breakthrough happens so we could get our lives back.
Well said Don! ??
I just try to keep things in perspective.. I cut my hair off really short, no makeup, sweats and tennis shoes everyday…even to church….I do not let myself be bothered by others opinions…..my mom always thinks I should at least “put on some lipstick” lol…. but I’m perfectly happy with how I look……if I felt the need to get fixed up I wouldn’t ever leave my house. The best thing I can wear fake or not is my smile. I might be hurting but I get through the day and I do what I can. No need to worry about anyone else and how “perfect” they appear… if God gives me another day to live then That’s exactly what I’ll do…. the more I focus on things outside of myself the better I am. My youngest son (who I homeschool) and myself volunteer at the animal shelter and the nursing home several days a week. We also visit 3 shut ins from our church weekly. This has blessed me more than anything. I might feel horrible but I throw on those old tennis shoes and my smile and just go.
Pamela, you’re such an inspiration!! I wear lipstick but no other makeup. I also love in sweats and sneakers… We’d should make a clothing line ? I also get my hair buzzed and just a little bends in the front to look s bit more feminine
lol I know we really should. Call it FibroStyle ???…. it’s really kind of funny looking when my son and the hubby will be dressed up in a suit and tie for church and I’m wearing the sweats….the running joke is they picked me up on the side of the road ?…. just keeping a sense of humor about it…..We put unnecessary burdens on ourselves all the time when really all we have to do is change the way we look at things and the way we do things. Doing what I can when I can. Life goes on whether I do or not. Can’t be fearful of being judged by people who don’t know or understand.
Amen to that!
Robin,
Once again you nailed it ! I swear it is like you are me with a better way of expressing yourself. It does help to know others suffer as I do and try to be upbeat and fun all the time. It is hard and getting harder but I find that I am gradually letting more of the reality show.
Thank you for your wonderful insight and undertanding. I think it makes us feel less alone and validated.
Rita, thank you for your kind words. Being authentic is a good goal. We need to keep healthy boundaries up as well to protect our well being. ?
I don’t even realize I’m faking being well anymore. I tell people I’m fine, but on the inside I’m constantly complaining about the pain I’m feeling. My life consists of daily trying to do all that I can in my day and each day there isn’t enough done. Many things have changed though. I’m 26, but I’ve grown up a ton And iI’ve deakt with much suffering. I’m really thankful for all that I’ve learned early in life because I’d rather learn now, than later and dealing with anything coming my way has become much easier. Thank you for your thoughts. It always helps to remember you aren’t alone.
Sam, you are definitely not alone. We need to take care of our health and not push ourselves beyond what we should. I’m proud of you! ?
This really hit home. I do pretend being well. Mostly so my children don’t ask me what’s wrong. It’s my job to worry about them, so I make sure they don’t worry about me. When they’re older, maybe I’ll explain to them why I am the way I am. Why I’m tired, why I lay in bed every time the weather drops below zero, and why sometimes I drive with the radio off to try and take down my headache. I’m also really good at putting on a smile and pushing thru the pain to others. I don’t feel so guilty about it though. I get exhausted having to explain what fibromyalgia is.
Angela, I think it would be good to be honest with your children. Help them to know it’s not their fault, is just that you have some broken parts that don’t work as well as they should. As mom’s we don’t need to pretend to have it all together. We want our children to develop compassion and empathy, not denial right?
Angela… I made the mistake with my oldest son,who is 18 now, of not giving my Fibromyalgia a voice. Not only that but I failed to teach him to be sympathetic enough to others… I’m doing things diffenently with my 12 yr old son… I mentioned in an earlier post the volunteering I do with him. It’s teaching him compassion for others which in turn has made him more interested in learning about my struggles and being helpful to me. He has developed a servants heart through these things…..he can still be a bit of a brat at times but it’s a work in progress. Don’t make the mistake I’ve made and spoil your kids because you have guilt about not always being 100% supermom. We put that on ourselves and it only hurts our kids.
Sometimes I just want to scream.
Janet, you are in good company, I know we all feel that way at times. ?
I find others with fibromyalgia to talk “real” with. It helps.
Paul, I absolutely agree that it’s so helpful to be able to have real conversations with others who totally get what we go through
This really hit the nail on the head for me as well. I’m in the process of going out on medical leave from work, after a full year of trying to make it look like I’m ok. My husband is probably the only person who knows exactly how much pain I’ve been coping with. Because both of us have chronic pain issues, we’ve developed a sort of code for checking in with each other. If one asks how the other is feeling, we have certain responses that let the other know whether there is something to be concerned about, or whether it’s just an average day. That lets us each calibrate what we ask from the other over the course of the day.
Rebecca, I’m so sorry you have to leave your job, is it something you enjoyed? Perhaps you can do something similar from home? I love that you and your husband have a code! ?
Thank you so much for writing this and all of the comments. I was completely healthy and on the go non stop and then all of a sudden I woke up and my legs gave out and I fell and my arm was stuck bent to my chest. From there on it’s all been downhill. I lost a job I had for 16 years that I absolutely loved because of my illness. I now have another job and have missed so much work because of barely being able to function. I often wonder if they are missing something because I don’t understand how I changed overnight and nothing can be seen. I do feel like I’m whining and people don’t believe me when I say I’m too tired or in too much pain. My legs and back hurt constantly. I feel like I’m not going to be able to function in a normal job again. It is a constant struggle. On a good day I feel like I have so much to do around the house but it just doesn’t last long. It’s so nice to hear that other people feel the same way. Thank you so much for sharing.
Cori, I had just been certified as a medical assistant when I got sick. I’ve always wanted to work in the medical field, so once my kids were older I went back to school. Unfortunately it was a short lived career. I can’t imagine how hard it is to leave s job you’ve had and enjoyed for that long. So glad you’re a part of this amazing community here. You’ll get lots of support
As a doctor of Acupuncture & Oriental Medicine, I hear similar feedback from my patients all the time. I am glad to see someone shedding light on this issue and actually talking about it!
Thank you Dr. Young. I have been a long time supporter of natural modalities
Actually, I DO say I’m having a bad pain day, or so far, my day has been ok. If people ask, I will honestly, up front, tell them the truth. But I always, always say that I’m not having a pity party, nor looking for sympathy. It is what it is, I say. Some days are ok, some days aren’t.
If someone wants more detail, they’ll get it. But most people’s eyes glaze over and they don’t give a crap. Or, they start with platitudes or worse, awful comments like “oh I have aches and pains too, but I work!” If it’s a friend, I refer them to the Spoon Theory, just Google it. If it’s not, I smile politely and let the conversation die. No point in continuing with some people. You know, those that know what they know and are always right despite any facts you slap them in the face with.
Basically, I’m completely truthful. And it works for me fine. I have long since stopped worrying about what other people think of me. Like me, or don’t. I don’t have the energy to waste trying to convince someone of something they can’t possibly understand. It really is what it is.
I’m no Debbie Downer. In fact, my friends will tell you I’m a joyful, happy person. Always looking for the positives in life. And I cut negative people out of my life immediately. I’m deeply spiritual and strive to remain “zen” as much as possible. Because being sad, feeling depressed, and worrying about things I cannot control physically make me hurt. It’s just not worth it 🙂
Shannon, I think your responses are spot on!!
I try to do the same. I don’t go on and on but I’ll say “having a tough day, but” glad to be here, or happy to see you” and then change the topic, ask about them. Not everyone wants to hear any more than that, but some do.(I *try* not to worry about the doubters, if I can.) This let’s me know who supports me ( which I wouldn’t know if I was just faking being well) and who doesn’t (or can’t – for reasons the author listed). This has really helped my social life because at least people have the context for my cancellations and are less likely to take it personally. Also, some of my friends are that much happier to see me when I do make it out. We can also much more wasily make limitations and accomodations: I can only stay one hour, or can you come to our house this time. . . (that way I can take a break if needed. . .)
For those that just don’t get it – the ones thst say “oh yes, I get tired too, etc. I’ve started to change my vocabulary. Instead of I’m tired, I’ll say “I am very *weak* today. I’m having trouble [concentrating, following conversations, sitting still, being comfortable, etc.], or I’m having trouble or I’m not able to [drive, eat, be social, etc.] This doesn’t work with everyone, but I find that being specific has lessened the “me too” comments and over time helped some people “get it”. All these things might not work for everyone, but for me, they help me feel like I’m living life as honestly as possible without feeling more resentful, disappointed or lonely than I need to be.
Hugs to all of you.
Excellent post Michele!!
Wow! Thank you so much for these ideas. I’m tweeking them and going to use them instead of expending more energy that I don’t have trying to be either accommodating or trying not to complain. Absolutely brilliant. “Having a challenging day, Michele, but I’m really glad I read your post”. (How’m I doing?)
I tried CBD oil on my pain doctor’s advice. He stated he had several patients that tried it and were able to actually reduce the dosage of opioids he was prescribing. I did not try the vaping, I only tried the drops under the tongue. Unfortunately it didn’t help me any. Perhaps I will try the vaping form of it. As we all probably know by now, although we share in suffering it is often to various degrees and areas of pain. As such it stands to reason that we all have to seek our own individual remedies to help with the pain. Perhaps one day there can be a cure all, end all. Until then, we still have each other. 😉
Amen to that Don! Let us know if you try the vaping and what your results are
Don, another thing that I use is a jar of ointment that has CBD in it. You rub it on your neck shoulders spine hip, wherever you’re in the most pain. I find it almost instantly stops the pain for a period of time. None of these are perfect but I find that it helps, the patches help, and oil helps under your tongue but you have to not swallow it for a while you have to leave it there so it can soak in to the veins under your tongue. Good luck with finding what works for you, it’s a battle, that’s all I know. Jennifer
All of these people are saying and feeling the exact same way that I do.I haven’t had anyone who is experiencing fibromyalgia,that I can really open up too and tell them what I’m going through.I do know that people don’t believe that I hurt and feel so horrible.I often hear,..”well,your looks don’t pity you!”or “you don’t look sick”.I feel so alone all the time,the only person who knows truly what I go through is my husband.I couldn’t pretend with him,and thank God I don’t need to.I do with everyone else,and it is so damn hard.I’m rarely out of my house,except for appointments, if I don’t see people I don’t have to pretend. I’m been told by my doctor to try medical marijuana, I have been on heavy duty drugs that do not really help,that using these narcotics the way I have been for almost 25years,is killing me.
Time for a change,listening to all these people writing to you has helped me see that Iam not alone,nor crazy.Hopefully in time I can write back and tell you I have got my life back,and am no longer living like a hermit. Thank you everyone for sharing.?
Debbie it’s so sad that people base whether we’re ill or not based on what we look like our appear to be. Keep us posted on what works for you and how you’re doing. ?
Debbie, we undertand all those feelings, believe me. Like you, I have felt less alone and validated when I read Robin’s thoughts and experiences and those of others. We will be holding good thoughts for you !