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Living With Fibromyalgia - Online Support Group

Explaining fibro to those who have no idea

#1

As if having fibro wasn't hard enough, I'm finding that explaining it to people is almost worse. Recently I went with my long time boyfriend to visit some of his friends we haven't seen in awhile and when they asked me where I worked and I had to reply nowhere because my pain is too bad currently, they looked at me like I was making it up. Then I get to explain that there's no way to really treat it because they don't know what causes it and there's no test for it, etc. It's so frustrating and I just needed to share that with people who may understand. I didn't ask for this disease or to be 26 and jobless. I have spent more money and time and effort on things that haven't worked just to attempt any kind of pain relief. So to get the condesending and "yea right" kind of comments and looks frustrates the heck out of me.

I find myself wishing I could have just broken a leg or something so people could see I have a "real" injury and not to mention a broken leg could heal whereas I don't have much hope anymore for getting rid of this fibro.

I don't mean to be too negative, I'm just overly frustrated and I'm sure there are others here that can probably understand the frustration of explaining how horrible this fibro can be even though we look "fine".

#2

Melissa 27,

I am in my mid-forties now but I do remember what it was like in my mid- twenties. I wanted to work and do other activities. You want to have friends and do things with them and all I remember as I look back are the faces at work- coworkers, bosses...at the faces at home -friends, family .. disappointment, frustration,anger,skepticism, sarcasm because no one completely bought the story. I think my depression started then. I could not deal with the physical pain but their attitudes definitely made it worse. The internet was in its infancy- not that big. I did not know there were support groups on line. But what did that matter? When you look at a face a person wants acceptance and sympathy because you are in pain. Twenty years later I know to let some people's reaction to roll off my back and I have learned to not share my story with people until I know them well. Even then I only give brief descriptions - " I can't do that activity or stand that long at that event." I keep the nature of my disability to myself. It is a disability and that is all they need to know. I think what is different I realized is then I wanted people to know but in reality ( for me) most people do not want to know. Only a few people over the years really genuinley asked me. I hate to tell you my experience because it does sound negative but when there is only one person (a boyfriend, a friend, one relative) that is all you need. Share those precious moments and remember someone does care. I had a lovely husband through many many years of this and his appreciation, his attention, his sympathy, his humor outshines those sad moments when others were skeptical, mocking, and cruel. It is about gratitude.

When I started one job I told my employer that I could only do part time because of an illness.I was honest I had bad days. I listed responsibilities I could not do because I could but not consistently. The emphasis I made was that I was going to try. I just let her know ahead of time that I had limitations. I had a doctor's note. In the end I showed her I did more than I expected. I wanted her to know I would do my best not to let her down. I experienced fewer disappointed faces that year. I only promised what I knew I could deliver and nothing more. The fllowing year she promoted me. That was an unexpected surprise. I don't know what my point is here but I think it is about angling things a little to your advantage. If it's negative reactions you have a problem with do your best to minimize them. Really most people don't believe what they cannot see ( the broken central nervous system) and that fact will never change. Good Luck. I wish you well

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#3

If you go to the tab "Forum/Discussions" and browse, or even type the word "understand" in the search box there, you will see so many others who have felt the same way and there's so much advice about dealing with others, which I think is harder than the disease itself.

Blessings, Sheila

#4

Oh my goodness, this concussion is frustrating and embarrassing me. I forgot that my last blog post was about this subject, and there were some good comments. You can find it here: http://www.livingwithfibro.org/profiles/blogs/dealing-with-hurtful-people

I got a lot of those looks too in my 20s and 30s....like "If you are sitting here talking to us easily, you can sit at a desk and work. Your pain can't be that bad." They have no clue. My further comments and thoughts are in the link I posted.

kind thoughts...Sheila

#5

Melissa 27.

I re- read my response to you and what you said. I realized I must have been having a bad day because I misinterpreted something in your letter. I am sorry. In time you will find people who will be sympathetic to your situation. It is hard when it all happens at once. It is overwhelming but I think you will mangage just fine. If you reach out as you are right now you will find some supportive people.

#6

Thanks for your post dozer! I really aprreciated you sharing your story! Especially about the job since that's one of the hardest things for me right now. I'm not sure what you misinterpreted but I really liked your post so I'm glad you misinterpreted it =-)

Thank you for your link too Sheila! I will check it out. I'm glad I joined this support group, it's nice to have people that can say, yea me too. There's not a lot of people that understand what I'm going through around me, although they do really try!

#7

Hi Melissa27,

I am glad to be of some help. If you ever have questions I am more than happy to answer you. I hope you do not give up on finding a medicine or medicines that can help you. My doctors were very clear that they prescribed them because I had chemical imbalances in my brain. In 2006 I was having incredible back and shoulder pain. I tried to go back on Elavil but it was not enough. My neck and shoulders were killing me. A fibromyalgia specialist (he wrote and submitted studies to the Fibromyalgia Network) prescribed me Zoloft and within a month the shoulder pain and back pain subsided. I was amazed. It works for some and not so for others. They have not found a treatment for the fatigue or REM sleep difficulties. I read in the Fibromyalgia Network newsletter that we do not produce cortisol (that helps the body recover from stress) at the same time as normal people. They get it around 3 or 4 am and we get it at 6 am - 8am. The newsletter is great if you want to understand what is happening to your body. I don't think it is so much the time but more about how many hours of sleep before it kicks in. Anyways they archive the articles so you can order old issues. It is not that much and I think they offer specials.

#8

There is a phrase that comes to mind when I think of this: "When you want to change someone else, think how hard it is to change one thing about yourself." I made a letter to send to friends, that said something like this. And, if the friend continued to be annoying I either omitted them from my life or I sent them another letter. Life's not fair.

I feel guilty and I am guilty because before I got sick with a somewhat "invisible" disease, I often would look at people myself with judgement of how could they be disabled or park in that parking space because they "look just fine." And, then one day my life stopped and I could no longer function from the inside and explaining it to others was impossible. I still have good friends that believe I can do better than I do. Some people have a built in decision of how sick you need to be before you are considered sick. They don't know if you were up all night staring at the ceiling or if you had diarrhea all night long from IBS, they can't see the pain in your ankles or how bad your head hurts. The syndrome has so many issues you must be a hypochondriac. Right? It really took me getting something "invisible" to truly understand what that is all about.

This is similar to what I wrote: Try it, it worked on many.

" I have an illness that controls the neurological systems of my brain. Much like MS does. I can tell my body to get up, but my brain might say there is no way, and I just can't. Who knows when the instructions will be heard.... in 5 minutes or in 5 days. Our brains control how we think, smile, hurt, care, love and hate. When they are broken and not working well, the amount of damage we have endured depends on how serious this illness or these illnesses can be. Since the brain controls everything, its a whole body event. Often, my feet hurt so badly I can't imagine walking across the room, tomorrow it might be my neck and my feet are fine.

Doctors and researchers all over the world have found several genes that are not working in us. Certain things can happen in our lives that put stress on our bodies like getting a serious virus for example, or having a bad accident. Our brains with this illness can not process this correctly. We often have what we call a "flare" which can last for weeks or even months over something as simple as a bad cold. Our brain can't figure out what to do. Medications are only bandaids. What works for one person might be poison to the other. TV ads are often laughed at by the very people they are said to help because the medine often makes people sicker or the side effects are so dangerous it can't be taken. Each person's body is different.

The most important thing that you can do as my friend or family member is to understand my limitations and know that I would not wish this illness on anyone. Its horrible having to cope with day to day problems and not make any plans because you don't know in what shape your brain will wake up tomorrow.

I can only give you a number, like the Spoons Theory, today I am a 5, I hope I can keep my energy till after noon and be able to acomplish something. When there is weather, the barometric pressure acts like a baloon on our veins.. the oxygen that we receive from the surges feels like waves in our brains and the pain that follows in our muscles hurts worse than anything I can describe to you. When you see a heavy nor-easter coming, make me a meal please, because I may not be able to get out of bed and don't be upset if I can't eat it, I might not be able to chew until tomorrow.

Once in a while I will have a good week or even a good month.... we remain so guarded because they are far and few between, but do happen. There is no cure yet, though researchers are working on it, so that small break does not mean I am cured, it just means I get a break for a while... and I never know when its going to be over.

Believe in me, I don't want to be sick - I was not given a choice. I hope this helps you to understand. I truly value your friendship. "

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#9

Hey Melissa,

I am also 26, also suffering chronic pain so severe I am now on a medical leave from work for an unforeseen amount of time.

I have so much shame about "not working" and "not contributing" to society and blah blah blah. You know what I say.. I say all those people do not have ANY clue just how hard, painful, exhausting it can be living with pain. I say, you have the power to tell yourself you are not defined by this illness. You have the power to lead a very fulfilling life, and people who truly love you will not only understand that but will also support that.

I support you girl! I know that you have a whole host of special talents and or things that make you special and a gift to this world. just remember that and try not to focus on the people who just truly don't know any better.

Best wishes.

#10

All I can do is cry, this puts my husband’s struggle on a new level! Thank you so much for these words!!!

#11

https://www.verywell.com/a-simple-explanation-of-fibromyalgia-716142 I’ve passed this article on to several people