When one person gets CFS, Fibromyalgia or any type of illness that is chronic, it becomes a family illness. Everyone who we are close to in our lives becomes affected by our physical limitations and how the illnesses also can change us emotionally as well. I admit that I am a moody person and I am blessed that I have the family, siblings, son and husband that I have. They all have accepted me for who I am, even though my diseases and my years of health problems has not been easy on them either.
I have been very fortunate in that my family has always been supportive and has never doubted the fact that I am sick. I have talked to many, many chronic illness patients whose families have been horrible to them and treated them absolutely terrible, called them “lazy” and practically written them off because they didn’t believe they were sick. I have never had to deal with any of this, thank God.
CFS & Fibromyalgia are so complicated, my husband will tell me often that he feels helpless. He wants to do something to help me but he can’t. He just has to watch me suffer. Then when the flares turn in to a week(s), it feels as though I am in a pressure cooker because I can see how badly these illnesses are scaring him. He will start asking me the second I wake up in the morning (and I mean practically the second my eyes open – no kidding!) – “Are you feeling any better yet?” I always say, “Uh – give me time to wake up to see if I know!”
Then the questions will continue on and off all day and all evening – “Feeling any better yet?” The thing is he knows how I feel by looking at my eyes – my eyes give it away. It’s just this desperation for me to feel better that he has this hope and it makes the pressure for me to feel better get worse. He has told me before that he fears that I will die from these illnesses during a flare because he has seen me so sick; sicker than he has seen people with terminal illnesses. So this is on his mind every single time I have a flare, which is a lot. That’s a lot for someone to deal with.
That knowledge makes me feel guilty and when I see my illnesses affecting my husband and son like this, it is a lot of pressure to feel well. There are times when I will just lie and say that I’m starting to feel better even if I’m not to help relieve some of the pressure because seeing relief on their faces is like the sun coming out after months of rainy days. Do any of you ever feel this way?
Cassie Sistrunk says
Sandy, I have CFS and fibromyalgia also and have felt the same way so many times. I think that’s the hardest part of the illness for me; how it’s affecting my family and the guilt over what I can’t do anymore. My husband wants his “wife back” so badly and refuses to believe that I may never be well again. I also have an 11 yr old daughter who wants me to take her shopping and other fun mother/daughter things. I want to so badly it hurts very deeply. Why should we feel guily, however, when none of this is our choice or under our control? I believe it only causes us more stress and possible makes us worse. That doesn’t mean it’s easy to stop feeling that way, but I feel we must try.
Sandy Robinson says
Hi Cassie, I hate having to tell my son I can’t do stuff either and I have step-grandchildren, young nieces & nephews I hardly get to spend any time with either. It takes every bit of energy of have to accomplish what I can with the one child I have. I don’t know how people with these illnesses do it with more than one. The ones who don’t have any are probably wondering how we do it with one! I know we shouldn’t feel guilty and have no control but that’s easier said than done. It does cause more stress and that makes our illnesses worse. I’m always saying it’s a vicious cycle.
Hi Sandy, I’m nearly 22 and have Fibro (and a few other things). The pressure to feel well is such a massive part of the psychology of the condition (I know personally, stress is a big fat flare trigger) – I’m young, my boyfriend and I want to travel, my friends want me to go out with them, my supervisor at work worries sick about me… it sometimes feels like a such a poor excuse for not doing things – even though of course it’s not my fault and I have no control over it! I lie often about how I’m feeling just because the answer never changes and it must get old. They understand but they don’t. My boyfriend has been absolutely amazing and it is still early days for me. I can only hope that it won’t become too much for him in the years to come. He wants so badly to get me better. How will we travel? How will we have children? I feel robbed – and I even feel guilty for saying that. There are people far worse off than me. Still, I live in hope for the day it gets easier.
Sandy Robinson says
Hi Laura, I was 21 when I became ill so I fully understand how hard it is to be so sick so young. It is even harder for others to look upon someone so young and wonder how you can be this sick but with CFS & FM, age doesn’t matter. It sounds like you have a wonderful boyfriend and enjoy what you have with him. If he was meant to be the one, he will stick around. I have still managed to travel and I had one child with the illnesses – just remember that we can’t do these things at the same pace as everyone else. Having a child took me years to recover from, however. So just a warning for you there! Take care!
Felicia Fibro says
I’m lucky that The Helpful Hubby doesn’t let his fears go to that extent. For the most part, he has become desensitized (like myself) to me shouting after getting a shooting pain or just when I’m not feeling very well.
The pressure I feel comes more in the form of me having to push myself to tell someone no. For instance, The Helpful Hubby got a bike so we could go biking together. When he asks me if I feel good enough to go biking and I really don’t it is very hard for me to tell him no. I can tell he is really excited to go. Usually I make myself say no, but once, while I was having a reaction to a tetanus shot, I said yes. We’d already biked 10 miles and only had 4 miles left to get back to the car. There I was, stopped on the side of the trail, nauseous, hot, dizzy, feeling like I was going to puke. I was really kicking myself for not saying no when I’d doubted if I felt good enough.
Sandy Robinson says
Hi Felicia, My husband is normally not one who worries but these illnesses have really knocked him for a loop. Men are fixers and when they can’t fix what’s wrong, they panic I think. I used to have trouble saying no, especially at work, but I have definitely fixed that problem since I physically can’t push myself anymore. I do sometimes have trouble saying no to my son when he wants to do something with me – especially if I’ve been sick for a while.
Oh yes I really do understand this! My family just witnessed me having a seritonin withdraw. It took a toll on them all my parents included. I didn’t know what had happened to me!! I was scared to death that I was dieing the one day! This was an accident, due to the fact I didn’t put the cymbalta in my pill case…went a wk without them.
Lately, I think my son was about to have a breakdown 3 days ago! He took all of his anxiety out on my daughter who really did nothing wrong. Yet, he continued to reject her by saying he wasn’t going anywhere she was. I know this was not her he was upset with.. I believe now, he’s really upset with me being sick. I feel so bad for my family.. but what can you do but take the meds you told to take and deal with the bad days the best you can. Yeah, it may not be fair, or doable, but you have no choice. We were dealt these cards, it could be much worse, so we have to suck it up and deal with it!!! Bless you all who have the same type of life. 🙂
Sandy Robinson says
Hi Laura – our kids really have to learn how to be tough at a young age, don’t they? These illnesses teach them compassion at an early age and it also teaches them how to be independent because we can’t do as much for them physically. I try to always let my son know how special and loved he is and that even if I’m sick and not able to physically give my full attention to him, I always love him. Nothing about these illnesses are fair – for us, our kids, our families – for anyone. But you are right – we have to deal with it.
Jenifer L. says
I also feel fortunate to have met a wonderful man who always tries to help. I was already quite sick when we began dating–most of our “dates” consisted of him coming over to my apartment, sitting on the sofa with me watching TV, then tucking me into bed at 10:30 when my 9:00 meds kicked in. I love him so much, that no matter how small, irritating, or totally wrong his efforts to help me are; I thank him sincerely & tell him how lucky I am. On the rare day that I have a little extra energy, I’ll cook dinner before he gets home (he usually cooks) or do one of “his chores” like take out the trash, or poop-scoop the yard. I think it’s important for us to remember that even though we didn’t have the choice to be sick, they have the choice to be here. I make sure we talk about things besides fibro, I give him support as he does for me, and communicate what he can do that would really help me–keep the kids quiet for an hour so I can nap would be a lot better today than vacuuming. I try to remind myself that it’s hard for my family too, and instead of getting frustrated with the “How ya’ feeling today? Any better?” that what they mean is “We love you & are hopeful that today will be better for you because we want to spend time with you!” Feeling pressured to get better can turn into incentive to enjoy the small moments without pain & keep hoping and working to get better.
Hello Sandy & my fellow sufferers, I have CFS, Fibromyalgia, CHCV, Arthritis and a Spinal injury. I just finished a 1yr. treatment for the CHCV (there is no cure the treatment just helps slow progression of the disease), the treatment was terrible!, my doctor said it is essentially the same as going through chemo. Now that the year is over and treatment has stopped, I am expected to be better just like that. People forget I suffer from many things because on the outside I look just fine and I get tired of reminding them that I’m not cured and have other illnesses too, so yes I play the game of “I feel better today” just to end the questions and comments. If something does show (like a limp or pain of any kind), I get questioned “why are you limping?”, “whats wrong with you now?”. So I just try to hide any little thing and don’t talk about it because I’m treated like I’m faking or just want attention……..
It’s hard not to show symptoms considering I cannot take any meds whatsoever for anything due to my CHCV, I am only allowed to take up to 600mg. of otc ibuprofen a day……..doesn’t do much of anything.
Well I hope you all have a less painful day tomorrow and every day after
I understand this so well, I have rheumatoid arthritis and CFS. I have been a nurse for over 25 years and I can honestly say all those patients I used to say “oh come on it isnt that bad: you can move I am so sorry for being so insensitive. I nurse with such a different attitude now and it seems to make a huge difference when I speak to my patients and tell them I have RA and we talk about pills etc.
The fatigue is so overwhelming, there are times I just want to crawl into bed and stay there for ever.My poor children must hate seeing me like this cause even talking is so difficult. one of my daughters friends mother has RA and I would say is in the last stages of the disease she is only 40 and has been very ill lately, I know when they talk about her together that my daughter looks at me like is this what will happen to you too. I love them so much and they are wonderful with me most of the time, My son (who is a chef) has moved back home and now cooks tea for me every night cause he knows how exhausted I am by the evening. I would honestly love just one day of no pain or fatigue! I am studying at uni and could only last for 2 hours today I felt so ill from pain I had to head home to bed.
I was diagnosed when I was 34/35 which is nearly 10 years ago, I wonder constantly if I will ever meet a man who will understand this pain and fatigue, other times I really am glad I can get into bed and stay there without having to worry about someone else’s feelings
Lore D. says
Thank you for sharing this message. I’ve had CFS develop into the leukemia-like condition with my immune system destroyed…and people still think I’m faking this insidious disease.
It was especially hurtful when I had to deal with a family member tell me I did this disease to myself by doing vitamin B-12 injections and kutapressin recommended by a doctor.
Even some “friends” and church members have behaved like the hurried priests that neglected the man robbed and beaten on the side of the road. They try to justify their lack of compassion or failure to help by concluding some ridiculous reason. I’ve heard the excuse “don’t understand your disease” but in the next breath say I “will pray for you”.
For all the ones like me who have suffered…Our Hope and Help is in the Lord and He will wipe away our tears♥ Praise Him Our Comforter! I know they don’t understand. It just hurts so much more when the pain won’t let up and sleep is so far away.
“How Great Thou Art” I sang with a friend recently via phone.
These modern songs sum up scripture that comfort and remind us…”Blessings Come from Raindrops”, “what if the trials of this life are mercies in disguise?” http://www.youtube.com/watch?v=1CSVqHcdhXQ
The song “No Matter What” is one I reflect upon http://www.youtube.com/watch?v=OA3MSqufJP4 through the loneliness.
Forgive me for venting, now to deal with the conviction and spend sometime talking with my Lord♥
Kristine Pass says
I love that you wrote this blog and tackled a subject so many of us face. Just yesterday I was thinking about the impact of my illness on my children and the first thing that went through my mind was guilt. The second, though, was the realization that parents (and families for that matter) come in all kinds of containers and although my family didn’t get what most get by having me as a wife and mother, they got something better. They got a woman who knows how to enjoy the simple things in life. They got wife/mother who doesn’t see the need to continually be on the go and therefore, has plenty of time to communicate. They got a family member who is unique and beautiful and as blessed by them as they are by me. And you know what? I have no doubt that this is true for your family as well! You have certainly shown a beautiful soul here! :0)
Sandy Robinson says
You are so sweet, Kristine! It is comments like all of these and these discussions that keeps me going with this site after all of these years. I think because we aren’t able to do a lot of the “big” things in life, we do focus more on life now, wouldn’t you say? I think I do, definitely more than I ever did before I became this sick. Bless you and please I hope you all come back!
I completely understand. My husband knows better than anyone when I’m feeling awful. He can tell just by looking at me. He’s even agreed to have a cleaning lady come in once a week. (and, bless his heart but he’s cheap!) because he sees how doing “extra” stuff like housework can make me worse (I have RA). He’s just fantastic but yes, I do sometimes feel bead about not being well all the time.
Sandy Robinson says
Hi Melissa, I would love to have a cleaning lady but right now financially I can’t since hubby’s not working regularly. But he helps me with it. That is wonderful that your husband was able to see that you needed the help and is supportive! Take care!
Debbie Wagner says
It is so comforting to know there are other mom’s in the same boat as I am. I’m 38, and the mother of two boys. One 19, and the other a still very dependant 11 year old. His life has been forever changed by my illnesses, and I feel like I have taken from him any hope he has of living a normal life, and doing all the stuff other kids get to do with there mom’s. I hate it. I not only have Fibro, but I also have diabetes, chronic pancreatitis, IBS, and peripheral neuropathy in my legs, and hands. So I spend every day of my life trying to find some way to make it easier to live with these illnesses, and to find a way to make them better. My husband like some of yours, worries all the time, and is mad that he can’t just “fix” it. He unfortunately gets mad at me sometimes, and he doesn’t spend a lot of time with our son. So our son is very dependant on me. I wish he wasn’t because I worry what he’ll do if I pass away. I feel so ripped off. Having had the better part of 20 years of my life taken from me because of chronic illness. I can’t clean my house or cook meals, and I feel useless because of it. Does anyone have issues with lack of intrest in intimacy? This is a big issue for me and my spouse, he’s really bothered by it. I’m usually in too much pain to even think about sex, and I feel like I’m neglecting him. I really try to stay positive and be happy but some days it’s just impossible. Blessings to all of you! Take care of yourselves. Thank you for listening.
Sandy Robinson says
Hi Debbie, You are dealing with a lot of chronic issues that one person should not have to deal with. I can relate to the intimacy issue because I too often don’t have the energy or the desire. My situation is a little different though because my husband is 22 years older than me so he’s at the age where that’s not such a big deal anymore so it’s not really a problem for us. But it was for me in my former marriage. We were both in our 20’s and I had the sex drive of a 50 year old because I was just diagnosed and was really sick at the time. Maybe try spending some special time with your husband, just you and him, a date night, or somethng where you can rekindle some of that lost spark. You might be surprised what will happen!
Sandy, thank you for writing this. You said it so well. I, too, have my husband and family supporting me … I am so blessed. CFS/FM is so difficult to deal with alone, I can’t imagine how others do it. I tell everyone I have the best husband … he constantly tells me to take it easy, not to over-do it, etc. Plus, he cooks, cleans and does the laundry. I am SO blessed. Hopefully, there will be a cure for this dreaded disease soon! Until then, let’s support each other.
Sandy Robinson says
Thanks, Patrice. I am glad you have someone supportive. There are so many who don’t and it is not right. My husband doesn’t cook, but he does know how to use the microwave, and open up a can of ravioli and soup so no one starves if I can’t cook! LOL
Cynthia Eagan says
My wonderful husband tries so hard to be a partner in dealing with this wretched stuff and has lately become proactive in research and finding treatment options because I’m unable to do it right now. In spite of his help, or maybe because of it, my guilt feelings are through the roof for not being able to be the wife I was before. But my pressure to be well is all self-inflicted. Yes, he desperately wants me to feel better, but he couldn’t care less if I’m unable to cook dinner or clean the house or any of the other things I enjoy doing as part of taking care of him. I want to feel better so I can do things for him and others like I used to because I feel useless. We all like to feel needed, and when those we love can’t depend on us, we may feel they won’t need us anymore. They do, of course, but it’s not always easy to be convinced of that.
Phyl Marsh says
HI Sandy & fellow suffers…
Thank you so much for sharing your stories….I have Fibro/CFS/RA/IBS & Under active thyroid…my Husband & family are very supportive…he worries that I might die when I am having really bad flare ups, as do my chhldren & gran children… I always tell them. I cannot die from what I have & there is no way, they are getting rid of me that easy :)….I use to have good days but now however, they are few & far between 🙁 I am always at the hospital to see one doctor or another…my Husband gets really mad when they say it’s what I’m eating causing the fatigue &IBS or it’s that I’m no exercising enough…I do yoga when can….I am 54 & so is my Husband Stan we have been together since we were 14 & have been married 35yrs this year. so he knows me very well….he does everything in the house cook clean ect,I am so blessed to have him & my family…..((((soft hugs)))) to you all 🙂
Health Compare says
Individualized exercise and nutrition programs can also improve many of the symptoms of fibromyalgia. An moderate daily exercise program is essential for improving muscle fitness, reducing muscle pain and tenderness, increasing circulation, promoting better sleep and for stimulating the body to produce endorphins, its natural painkiller.
I am 23, I have FMS and Bipolar. I have a supportive boyfriend, but not a supportive or understanding family. I’m just tired of people who “know” someone else with FMS being “cured” by this diet, that pill, or by seeing a Chiropractor. I live with my grandparents who are 90 and 83, the pressure to feel well is intense. I still get told that I’m lazy and that I “don’t do much.” I’m Stubborn, so I push myself further than I should but when I spend time with my boyfriend I can relax and rest. It’s great to have met someone so understanding and supportive. (I’m the second FMS/Bipolar person he has known.)
As far as exercise… I have no car, so if I want to do anything each day to escape from my grandparents I have to walk. I walk at least a half mile each day, at most I can walk 5 miles, but the next day I pay for it.
Sandy Robinson says
Hi Leah, It is often older/elderly people who are the most critical of us, I have found. They assume that there is no way we could possibly be worse off physically than what they are and if we can’t get up at 5 a.m. and run with the roosters then we are lazy and worthless. I am glad to hear you have a supportive boyfriend.