FM, like any other major illness, can strike hard. Your life has been changed, by something that is outside of your direct control. FM, in this respect, is no different than if you suffered a major accident and came away with a disability. You will experience the same stages of grief as one does, when you lose a loved one.
These stages must be dealt with. When people suggest to you to “think positive” or ” just stop thinking about it and you will feel better” or the worst one, tell you to “look on the bright side,” or any one of 100’s of other ways of trying to get you to deny these feelings … ignore them. As the longer you deny the feelings, the longer it will take for acceptance to take place. So don’t let someone try and “jolly” you along, as the sooner you face it and work your way through these perfectly normal feelings, the better off you will be. Just knowing that they are normal, can be a huge help, which is why this page is here.
As with any serious loss, there many stages we go through:
Shock stage: This is the initial paralysis … we are reeling here, as our life as we knew it, just changed.
Denial stage: Trying to deny it’s real
Anger stage: Frustrated, lashing out and generally enraged.
Bargaining stage: Almost desperation, as we try this or that medication, or procedure, with the idea in mind, if we do X we can cure this and it will go away.
Depression stage: When we finally realize, it is real, it’s not going away.
Testing stage: At this point, if we are lucky, we are looking for more realistic solutions.
Acceptance stage: The point where we look forward and move onward.
Is generally short lived and will phase out on it’s own.
Is an almost automatic reaction. It’s like a built in safety device, until your mind can deal with the idea.
For someone just diagnosed with FM this means, you will tend to try and pretend it’s not there and just go about your daily life, in a “normal” fashion. Which, generally speaking, for anyone with a serious case of FM, is impossible … which you will quickly discover.
All of us feel this one. You might get mad at your doctor, for telling you about it. You can get angry at your own body for its betrayal. Anger at others who don’t understand or just don’t get it, is almost a constant. This stage can last for a long time or a short time, but end it must, as a major event, as it’s not helping you. As anger is stressful and any added stress just makes matters worse. But expect it and know you can get over this phase.
This is when you grasp at straws, the unproven medications, the “try anything” approach, sometimes with disastrous results. This is the point when you would spend any amount of money or put up with any procedure, no matter how outlandish, if it would just make this go away ! So don’t be too surprised at yourself, if you find that you are looking at the most recent “cure” with almost longing eyes.
Grief or depression:
Once all of that doesn’t work, then comes depression or real grief. This the stage that is the most dangerous, for the simple reason that it can become self perpetuating. But, understand, it’s perfectly normal to feel this way for a while. You almost have to mourn the loss of the life you had and learn to deal with your reality as it now stands. However, you cannot allow this feeling to force you into isolation and withdrawal. If needed, get help for this stage, professionally and medically, if required.
By this point, we are ready to look reality in the face and have armed ourselves with a bit more knowledge, to where we can make reasonable choices in our own care. We are ready to honestly test and try more realistic approaches. This is the point when you learn, read, study and put into practice, things that will help you.
This is where you come to realize, things are as they are and start to look at our lives in terms of … what can we do, not what we cannot, but what we can and then proceed to go out and do it.
This is not a series that you do once and never again, as you will tend to do this same grouping, on a smaller scale over and over. The process is much the same as learning to handle the death of a loved one.
In our history, we used to allow women to live in “Widows weeds” for a year. A woman wore black and a veil for at least a year and was not expected to handle anything of any major aspect, until that year was over. They were given extra consideration and support for that period of time. This was a wise idea, that has unfortunately fallen by the wayside.
As we fully expect those who have suffered losses, in this case physical ones, to jump right back into life, as soon as they are medically recovered. In our case however, we never “recover” in that sense, as it’s on going. But, as with dealing with a death, it does get easier as time goes on.
Which is where support comes in.
It’s a thing we must have, a circle of friends, understanding spouses and or family members. Our forum was created for just this reason, to provide a support group. ( Give me time to reply to any new post as I am an FMer too )
Now, you will hear of those who say that support groups are the bane of any chronic illness. Do not even remotely listen to such people. There are those, who honestly believe that a mutual support group, is no more than a pity party that will make matters worse for you, not better. They could not be more wrong. A good support group is what keeps you sane, on top of it and working towards improvement.
The key word here is a “good” support group. If the group you find, just tends to sit around and grouse and moan 24/7, then they are not a good support group. Once in a while if they need to vent, that’s fine, but if venting is all there is going on… this is not helpful. Solutions and suggestions, to surmount the problems they are venting about, those are helpful. It might take a bit of trial and error to find a group that is helpful to you, but it can be done.
Your spouse or family:
These are your key players. What equals a good support group in this case ? For your spouse, it means full participation. It is not enough that they believe you and or that they take over the lions share of the financial burdens etc. They need to be part of the solution.
They need to go with you to your doctor perhaps or attend meetings with your local group. To be part of your exercise program, help you to keep track of your logs and record keeping, your medications, etc. A spouse who is part of the process is better informed and furthermore, these acts also give them the gratification of knowing they are helping you as best they can.
Facts are facts, during the long diagnostic process many a person has found themselves alone. As the mate, who is not part of the process, has gotten fed up with it all and cut and run. Some 75% of such relationships, end in divorce. So for the 25% that hang in there, they need to be part of the process, it’s a must do.
A mate who is not part of the process is, to be very blunt generally part of the problem. As they have left you entirely alone to deal with all of these things, by yourself. And further, since they do not understand what FM is all about, they often make demands of us that we are unable to meet.
Most of us have had to deal with, at some point, the idea of going to work or school for the day, struggling with our jobs, our boss etc. Only to come home to a mate who is complaining because we are too tried to make dinner, or that we had to let the housework slide, or that we have been avoiding sex. The kids might be ragging again because they had to cancel yet another event, as we didn’t feel up to it. Or because we have asked them to take on more responsibility.
It doesn’t take long to become majorly depressed in such a situation, the why … is fairly easy to see. As we are not only having to deal with the illness, we are having to deal with a family who may not be helping matters, by their expecation that everything remain the same. This does not pertain to just your immediate family, it is also for your extended family. For the simple reason, can you say a nightmare at every family gathering if they do not get it.. either ?
Extended Family: Educate them, help them to understand. Take them with you to your doctors appointments and have the doctor tell them what it is all about, whatever it takes.
The people who do the worst with FM, are those who are alone, with no support group of any sort. If you cannot convince your extended family members, then you might just do well to limit contact with them. The reason is simple, it doesn’t help you one bit if you are constantly having to battle your in-laws, for acceptance.
This can be a great loss and hard to handle. However, understand that just because they are related by blood or marriage, doesn’t mean you have to deal with whatever they care to dish out. If what they are creating in your life is more negative than positive, there is no reason you should have to tolerate that, just because they are kin.
The same is true of friends, some will be able to adjust, some won’t. Those who cannot and demand that we behave just as we did before, regardless of the strain this creates for us, is … quite frankly, in my personal opinion … not really a good friend. As a good friend would understand and make allowances. So, this can be yet another loss, the loss of some of our friends.
Friends and fellow FMers:
Blunt fact is, no one is going to really understand how you are doing or how you feel, other than another FMer. We are FMily, as its said, as we, above all, do honestly understand and can relate. Not only that, we have tried things that perhaps you have not, so you can gain from our hands on experiences
Start your own support group:
If there is not a group handy, start your own. It can be a simple affair, meet at a local coffee shop perhaps, and share information. Join an online group, or make one 🙂 there are lots of us out there and with a little bit of work, you can build a net under you, for when FM makes your life a bit too complicated.