Being sick for 20 years has taught me a lot and I think one of the main things having these illnesses has taught me is how ignorant and judgmental people really are. People who don’t know us, don’t live with us, have never spent more than a few minutes or a few hours a week with us, assume they know more about what we go through than what we do ourselves. Society and some of the medical community assume that CFS & Fibromyalgia are made up illnesses to cover for people who are nothing more than lazy, worthless drones whose only ambition in life is to see how much money they can collect from the state. Am I right? How many times have we heard this?
I feel like one of the fortunate survivors of CFS & Fibromyalgia because I have been able to get out and work 1 – 2 days a week, 4 hours a shift. But I will sit in the breakroom, look through the job postings, and see all of the job positions that I am qualified to do and would love to do, but I physically can’t. It is hard for someone like me to not be able to do that and most people don’t see that. They don’t realize how hard it is for me to not work a full-time job, using my talents and skills and ambitions.
I hope I write this without it coming off wrong but I have found that probably the most judgmental and ignorant group of people that I have encountered when dealing with these illnesses are elderly people. I love to talk to elderly people and I always try to show respect to them, hold doors open for them (especially if they are using wheelchairs/walkers, etc.), but they seem to be rather rude to younger people who are sick. I feel that they think that because they are elderly, they have earned the right to be sick, handicapped, or whatever. I didn’t ask to be sick. It’s not my fault I became sick so young. It happens. Being old doesn’t necessarily mean that you are in worse health. My husband is a perfect example: 22 years older than me with a bad heart, several heart attacks and triple bypass and he can still go circles around me.
People also assume that we fake being sick so that we can collect disability from employers or social security. I’m sure there are some out there who are faking it – there are always those do. But most of us with these illnesses have long track records of working very hard, long hours at jobs for years. If we are able to, we still try and work a few hours a week if possible. I personally made good money back when I was still working full-time. Those who receive social security disability or disabilty from their former employers know that the amount they receive monthly doesn’t come close to what we once made. Many have lost their homes, went into major debt, and have given up great lifestyles that they were once used to because of these illnesses. We don’t choose to live like this, we don’t want to live like this. It’s what we have had to resort to in order to survive.
The realization of me being on disability really hit hard here this past few weeks when we were having vehicle problems with my husband’s mini-van. We bought his mini-van brand new in 2001 (it was a 2002 model) when I was 9 months pregnant with our son. Whenever we needed a vehicle, we would just go and buy one and we could get a brand new one. Last week, after spending over $1,000 on repairs on this van, and the garage still not knowing what’s wrong with it, we had to decide whether to let them continue to work on it, trade it in on another vehicle, or just bring it home and run it until it blows. We had to bring it home because we couldn’t afford another car payment right now – not even for a used mini-van. We were looking at one that was 5 or 6 years old and we still couldn’t do it.
People assume that they feel the same type of “tired” that we feel. They have no clue what we go through and tired doesn’t even begin to describe the intense exhaustion and pain we suffer from. Everyone gets tired, but normal people can recover, still work, lead normal lives, and their bodies don’t completely shut down on them.
What assumptions are you sick of people making about you? Let me know in the comments!
Your article certainly says it all. I have Lupus and CFS-Fibromyalgia, Sjogrens, positive for RA and the list goes on. I have all “invisible” diseases. Lupus is referred to as “The Wolf in Sheeps Clothing” for a reason. I cannot tell you how many times people have said to me, “but you don’t look sick, today”. My friends and family have had a harder time accepting my disease, limitations and change of lifestyle, than I have had. I was even told to “buck up already-Maybe if you got off your lazy ass and got out more, you would feel better”..WTF, who says that to someone??????? I feel my blood boil every time I even say it or type it. Like I haven’t been through enough-I got sick, stopped working, waited for two years for disability, my husband told me he’s dating other women because I’malways sick and never want to do anything (“WANT”, try CAN”T” instead), I left him, had to move in with my daughter and son in law and three small children, no privacy and most of all, the guilt of “letting” my life go in the toilet and always having to hear the “Oh come on, you can go out” and then having to tell everyone that I won’t make plans in advance because I usally have to cancel them anyway. We carry an enormous amount of guilt already, that NO ONE needs to say these things to to add to the guilt that we’ve already put upon ourselves. I used to “share” with my friends and family, how I felt all the time, but it was told to me to “stop complaining all the time” and “so now what hurts on you today” or “so what’s wrong with you today”. UGH!!! Here I thought I was sharing and trying to educate them about Lupus and how it affects me, because God forbid, they would even bother to educate themselves or pull up a website to see that I’m not abnormal, I’m a Lupie and that IS NORMAL for me. But instead my “educating” them has been construed as nothing but COMPLAINING!!!! I now have to keep my mouth shut, and work hard to not say anything about me or my health. My 8 and 4 year old granddaughters, show more compassion and help me, than my own daugther, friends and family. Why is that, I wonder? God Bless their big, little hearts, for sure. Whew-that felt better! LOL Good luck to you and your health-Thanks so much for the article!!!!
It sounds like you have really been through a lot and no, you are not complaining. This is your life, it’s what you have to live with and deal with every single day. God bless you and bless those granddaughters for being a light in your life!
Your are correct about wanting to explain something that you cannot explain to yourself. People never want to hear about your health. I just tell everyone I’m good. This is the only place where you can go and tell someone how you feel and they will understand and support you. I gave up making plans along time ago. If I feel good then I do what I want. I always feel if I go somewhere that I will ruin their good time, so I just make my own good time when I can. Acceptance is a slow process and you have to do it in your own way. Good luck to you and you will be in my prayers.
well, sandy, i can totally empathize with everything that you just said…i’ve felt the same way for a long time. i think that i am mostly sick of everyone thinking that i am lazy because i can’t seem to hold down a paying job for long (my health problems always seem to squash that for me) or because my house looks like a pig sty. i’ve felt this pain and fatigue for a long time…and i am so glad that i finally have a name for it. fibromyalgia…with bad fibro fog i might add…is so hard to live with for me. 🙁
Thank you for writing this. I have been going through this for far too many years. If you listen to people you will feel worthless! It’s things like this that help me remain balanced…Thank you!
I have Crohns, CFS, and FM, Depression, Hashimoto’s and my family although somewhat supportive still is not fully understanding. I have experienced everything you described, I have not even attempted to apply for disability, as I don’t have the fortitude, nor the energy to go through with it, even though we are financially strapped. I did find a website that has helped me, I am not advertising for it, but its called patients like me, Its at http://www.patientslikeme.com It helps me relate to what others are experiencing with the same symptoms etc.
Thanks so much for the article. I was diagnosed with FM about 4 months ago but I think I have had it most of my life. I have spent a life time being so hard on myself for being lazy and stupid. I have always pushed myself because of this. I wound up being a people pleaser and driving myself into the ground. I have pain most of the time but extreme pain is occasionally for me. The fatigue and brain fog is almost constant. I have guilt because I know most other FM sufferers have more pain yet I do not work. It is very hard to maintain relationships or to give your employer confidence in you when you are so spacey and forgetful. I am not lazy, I am not stupid. I am very sad because I feel left out and misunderstood. It is lonely having a hidden disability. It is usually best to not talk about it because if you do talk about it you can see that the person is thinking -” hmmm she looks fine”. But I still have joy in that God will never leave me or forsake me. He has given me a loving husband and two wonderful children. His grace is enough! I am still learning about all this. I don’t take any prescriptions, only Advil or the like. I exercise everyday and have most of my life – this is why the doctor thinks I am doing as well as I am. Thanks for listening:)
Barbara – Your post reflects how strong a person you truly are. I think that we are harder on ourselves than anyone else is and it’s because we have been told and hear so much that we are lazy and worthless – but we’re not. We are so worthy. God has a huge purpose for us – I truly believe that!
I have caught myself thinking “I wish for one day you would feel like this”. Just the everyday pain most of us live with would send the “healthy” person to the ER. I am sick and tired of being sick and tired. I am also sick of being dismissed. If I am lazy then why did I get more work done in a day than you did all week? If I am stupid and ditsy why do I have the diploma on the wall and you don’t? I just thank God for His grace and strength to get me through the day.
Im to tired to even type this comment right now im 26 and LC said it all everything in her post sounds just like my family and friends calling me lazy and how i should just get up and do something and go out because it will make me feel better actually no it just makes me more tired i end up feeling worse and i end up in bed for two weeks because i listened to stupid people who dont understand my illness. I coulnd’t even count how many times i have gotten ready to go out with my friends just to turn around and come back home 5 min after walking out the door because getting ready took all the energy i had i have had my boyfriend blow dry my hair numerous amounts of times because i can’t even lift a damn hair dryer to my head! he’s the only one that seems to understand my pain or at least tries to…I also can’t stand how when i say im tired everyone else says well we all feel tired your not the only one OMG does my blood boil because it’s not the same kind of tired…those people can sleep at night and they get up the next day to go to work bright and early and go out after work to get drinks i can’t do any of that i can’t even be a normal 26 year old….the weather plays with my body is so many ways its disgusting if it’s not a migraine one day it’s a stomach issue or the pain that just shoots threwout my whole body…i feel bruised all over and like a person beat me with a baseball bat for fun!….ive applied for disability twice just to get denied and told that i can go and do the same job i had in the past well gee thats funny because i got fired from that job because of my illness so if i can do that job still then why the F am i not still working there and why did they let me go??? YA good one social security!! Im not lazy…i have worked everyday that i could since i was 15 ever since 15 i have not been out of work not even a year if i left one job i had another one not even a month later and i worked part time until i was out of highschool and from then on i went to college while working fulltime so when someone tells me im lazy i like to just spit in thier face! sorry im so bitter but who wouldn’t be when they get told they are lazy!! I WOULD LOVE to get rid of this illness and work full time again that would mean no more pain and having fun on weekends with friends and doing things that most people normally do but i can’t do anything like that anymore because of the fibro!!!
I love what Rose said about being too tired to type her comment, and I’m sorry you are, Rose. Wow, now that’s something healthy people can’t get their minds around. But how true it is. How many times have friends/family sent me long (a page is long for my brain fogged mind) articles that I simply cannot read because I’m too weak in body and thought processing. They think I don’t care enough to bother. They won’t/can’t? even begin to understand what it is for me to be in this place at this time of life. I’m a home educator who LOVES learning and I can’t read?!!!
I can’t thank you enough for having this forum available to us. It’s 3 am, I’m sleepless and sought you out because I was just realizing that my lifelong friends have slowly drifted away and it’s a sad feeling. But isn’t God amazingly kind? He recently brought a friend into my life whose father lived with this sort of a chronic illness most of her life. She truly understands and cares, comes by just to see how I am when others I have known for decades have NEVER taken the time to visit, though I cannot get out or make plans with them. I am thankful for a patient, providing husband, a safe, comfortable home to rest in (comfort being a relative term ;o), for seven dear children who try in varying degrees to “get it” about this illness, and for an ever faithful God whose grace really is enough, especially in the lonely times.
I notice that possibly all of the posts here are women. Why is there such a predominance of women afflicted with this illness?
You are though and a fighter. You are an inspiration to a lot of people. Just have faith in God and all will be alright. I am glad that you share your story. Be strong always.
S. Topping
Blog Writer