We have been told we have fibromyalgia. It is a syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues and BLAH BLAH BLAH you know the rest. For GODS sake we live it everyday. We are more than a diagnosis, and we should not all be lumped together as a whole, there should be stages, and this is why
Fibromyalgia should be for those that have recently been finding out that they are experiencing more pain and fatigue than before, you’re not sure what is going on but you hurt and your tired.. you can still go to work, you can still make it through your day, but you know something isn’t right. So it’s something you’re going to bring up at your next routine doctors visit.
You are in pain a lot , sometimes taking an Advil or ibuprofen or what have you .. you get a little relief, you have already been diagnosed with fibromyalgia, and you have accepted the fact this is something you are going to have to live with, you feel a lot of pain and you are exhausted almost every day…but for the most part you keep going and hold down a job, can still go to events, spend time with your friends and loved ones..and have somewhat of a good time.
You are in constant pain, you are constantly tired, more often than not. You question yourself whether you will be able to function normally anymore. You are thinking about maybe not working because you no longer have the energy you once had..you get home from work and all you can do is rest.. friends call and you have to turn down the invites..you have no energy left and you have to rest up just to go back tomorrow. In this stage you start to feel more alone..and more and more people are beginning to think you whine an awful lot. And this stage can last a long time, years even.
You are in pain all the time, good days are few and far between…your calling into work sick more than you even make it in…you’re in bed a good portion of your day.. when you do have a good day you take advantage of it, and do as much as you can, all the things you have left in the past weeks you cram into your day… knowing tomorrow you will be paying for it..possibly even up to a month..but you do it anyway..
because you finally feel good enough to do SOMETHING! By this time your friends make plans without you, they already know your excuses and are 99% positive you will say no.. so they don’t even bother to ask anymore. Your family begins to think you are using fibromyalgia as an excuse to not do things..
because level 1-3 you were able to do some of those things even with fibromyalgia, now you can’t..so OBVIOUSLY you are using your diagnosis to get out of everything. You feel alone, isolated, worried..emotional, sad, and well..did I mention you feel alone? This stage can last years as well.
Level 5: Anger and Refusal
It sort of is for most of us, We don’t think I will ever yield to this horror,and we will continue to search for answers – for reasons… Its all I can do.. I refuse to believe this horror of an illness just randomly happens…
You have already been let go or have quit your job, you are asking questions about permanent disability and how long it takes.. hoping a majority of people will say 3-6 months tops, but instead your fearful of the horror stories about everyone being denied and it taking years for most..you are struggling to make ends meet, maybe you moved someone in to help or moved in with someone to save…you spend a lot of your day in bed. Although you still take advantage of that one good day once in awhile.
You are sore, very sore.. you cry a lot. You feel like a prisoner in your own skin. By this time you have already explained to your friends that it still feels good to be invited even if you don’t go..they invite you to a few things the next week and then things go right back to the usual..laying in bed crying.. feeling alone.. feeling abandoned.. misunderstood..and you have found that the only people that you can relate to are other people whom have been diagnosed with fibromyalgia. What a good feeling..not so alone anymore.. and you wish that your friends and family could see what its really about, this stage can also last for years.
You may or may not still be waiting on disability, Fibromyalgia is now a way of living, most of your friends are those living with fibromyalgia themselves, everything you do takes your precious energy..simple daily tasks you took for granted in earlier stages, going to the bathroom, washing your hair, taking a shower, getting dressed, tying your shoes..even your everyday jewelry irritates the shit out of your skin..no energy or desire to put on “your face” before going out..no energy to curl or straighten your hair..with all the medication you are on or have tried, you are dealing with those side effects as well as living with fibromyalgia.
You now have Netflix or Hulu because going to the movies happens very rarely..very very rarely..and you are human and still enjoy some normal things..like watching tv… you try to stay current on any news regarding fibromyalgia, in hopes they are closer to finding a cure… most of your friends are not around anymore.. they have things to do.. and you? Well.. you need to rest, because you just vacuumed! It’s easy to feel overwhelmed in this stage, because things are piling up around you… bills, laundry, dishes etc.
You do a little everyday…you push yourself so you don’t feel like your day was wasted in bed..you feel guilty.. very guilty..you know longer pull your own weight in the house..your kids, spouse or family member get things for you more than ever.. tissues, something cold to drink, meals, blankets etc..they try to do it in a nice manner but you still feel like a burden…you can’t remember anything.. even important dates.. birthdays, anniversaries, school events etc…not only can you no longer remember shit..
When you start to say something mid-sentence you’ve forgotten what planet you even live on..let alone what it was you were going to say…(thank God for the few people that do pay attention and can tell us what we were talking about to begin with)..
Also you know more about fibromyalgia in this stage then your own doctor and basically laugh when trying a new medication…same drill as before.. and same results.. nothing helps 100%…your not even sure it’s working at all…but you keep going…at this point you know who really understands and who can care less.. even your so called close family members that claim to care.. you know the truth..and you show extra love to those that get it..because after all, other than your fibro friends they are all you have left…
You may see a stage here you are currently in..some things may not be exact give or take…but I know one thing for sure.. fibromyalgia isn’t the same for all of us..just because you can work and I can’t doesn’t mean I wouldn’t love too, or I am lazy.. it could simply mean I am in a different stage than you are..which is most likely the case..It’s not fair to assume you are better or can handle more pain because you still have a social life.. our hearts ache with pain that fibromyalgia has stolen that from us.. we want it back so bad..
We live for our good days, and we support each other through the bad..please do not judge others before knowing their journey…it’s not your responsibility to decide what stage someone else is in..we are fighting the same battle.. we all want the same cure..we need to try to stay positive to help others through the bad days, so they will return the favor when we have our bad days..love goes a long way.. don’t be afraid to love someone with fibromyalgia..we have some of the biggest hearts.. because we of all people know exactly what it’s like to be misunderstood… However I think Stage 7 could be –
Level 8: Acceptance
When we finally receive a definitive diagnosis we are filled with fear, sadness, anger, and many other feelings, including relief. Someone has finally given us an answer for why we feel the way we do! Once we learn to accept this, and learn our new normal, we can learn how to adapt to this new life.
There is no set amount of time it takes to learn this acceptance piece, but once we are there, we can start moving forward and learning how this new life will go, accept our “new normal” and begin again.