A few months ago I was formally diagnosed with fibromyalgia. I was upset and grateful. Upset that it took so long to put a name to what is happening to me and grateful that it wasn't anything truly terminal. Fibromyalgia can be cured if caught in time (you can reverse the problems that come it), if it took too long to find out about it and treat appropriately (like many decades) the symptoms can be eased and people can live with it rather well, but it can always flare up again. It took a over five years to get diagnosed and for me to start doing something specifically about it, so in G-d I hope that I can be cured from this within a few years if not less.
The main reason I was upset was because I went to Doctors (both medical and natural) since the first sign of pain and strangeness in my body and my mind and nobody had anything to say about the cause or the root cause of what was happening to me. The symptoms were being treated, but there was no actual stopping of what was really the cause, so I still felt bad and in pain. Doctors (especially medical Doctors) do not seem to understand the term root causes anymore. That the root causes have to be treated for curing/easing people's sickness and pain. Doctors have become lazy. However, thankfully not all are like this and if you do your research and you ask around and you take the time to do the footwork you WILL find a Doctor that knows what he is doing and can name your problem and find solutions to it as much as possible.
What is hard is to find are new family members (and in some cases friends) that can understand what you are going through.With some diseases and physical ailments, it is obvious that the person is in pain or has a problem of some kind. The family and friends and people around them can see it and sense it and therefore can have some degree of understanding as to what is happening to the person. The problem is with people who like me are not lying on a bed all day long and with crutches or with abnormal visible body ailments.That is a "problem" because the people around me/us don't understand how we say we are depressed or in pain or diseased when they see us walking about and handling our pain without much complaint and so on and so forth.
When they see us being essentially "normal" they don't understand why are we so fatigued so easily, why "out of a sudden" we have pain and how come we aren't coughing or looking in pain and about to vomit our innards since we have a disease? Bypassing the macabre issue that people expect you to be on death's door in order to prove that you have a health issue, it is sad to think that family and friends are unwilling to spare some compassion or understanding your way just because the pain and suffering is not visible to them. Even after explaining to them what you are going through, asking them to please do the research on your condition (and most don't and there is that feeling that they don't care to make the time to find out which hurts), it just seems as if you just can't get through to them and make them understand what is going on and why even though you look "normal" you are going through so much physical and emotional pain and that you are really really sick.
The point of my post is basically just to provide some insight and some advice on how to deal with this situation. First it is appropriate to acknowledge your feelings about this situation. If you are angry at your (hopefully former) Doctors and care takers and practitioners for not acknowledging your pain or at least trying harder to understand you and therefore finding alternative reasons for your situation, then be angry. If you were disappointed, then be so, if you were sad then give yourself permission to be sad and acknowledge how you feel. You can write them a letter and burn it (if you do not want to burn that bridge for whatever legitimate reason), you can tell them that were disappointed in their care (even if you make a decision not to see them again try to leave on friendly terms), or you can just move on and not see them again. You can also do what I did, but I wouldn't recommend it as it can leave you more frustrated than anything. If you want to know what I did, I wrote it in another post. I felt it would take away from this blog post. However, it is important to acknowledge what you feel and to give yourself permission to be angry and disappointed. Express it as healthily as you can to save yourself time, effort and peace of mind.
You should also consider acknowledging how you feel about your family (and friends) reactions to your diagnosis, or your pre-diagnosis time and your symptoms and conditions. If they were not as compassionate nor understanding as you hoped, acknowledge that you hoped that they would have been compassionate and understanding. If it makes you feel sad, acknowledge that if it makes you feel angry acknowledge that. Once you give yourself permission to feel however you want to feel or whatever was your gut reaction, you will start the healing process. A lot of people like to suppress their feelings, because they don't want to seem ungrateful at life or feel bad for having bad feelings against family and friends. It is better to be real with yourself and how you feel and to acknowledge that you had expectations that were not met. If you want to share this with those that you are disappointed with, then do (no need for this to be a bad nor mean experience, speak to them in a cool and respectful manner using a lot of "I statements" and avoid "You statements" as much as possible: "I felt extremely angry and disappointed that my sickness/disease/pain wasn't considered meaningful enough that when I asked if research could be done so you would understand what is happening to me, no research was done and instead questions as to the validity of my situation continue to arise, which fills me with more anger and sadness. If my situation does not merit consideration nor compassion by others, I am very saddened and disappointed by that, however I am not going to feel bad for not appearing as sick as others think I should appear and even if I must go through this alone, then I will for I want to be healed/feel better soon."
We cannot control the feelings and actions of others in the end, but we can control our own. Even when you feel anger or sadness or even depression over the behavior and reactions of others, don't let it get it to the point where you are completely defeated by how you feel. Once you have acknowledged how you felt, you must be willing to fight for your health. Depression, anger and other negative feelings are normal part of human life BUT they can leave a lot of scars and even more so they can leave an imprint on your spirit, your mind, your body even. Your mental processes can begin to change and even your brain chemicals and then you can fall into a chronic depression or anger that can make you even sicker than you already are. Keep that in consideration and be mindful not to overly feed those feelings (which you have a right to feel in the first place) which can cause you more pain that necessary (and unnecessary rifts with family and friends).
Once you have acknowledged how you felt, gave yourself permission (and forgiveness if necessary) for feeling the way you felt (or feeling bad about feeling the way you felt), told others as healthily as possible on how you felt, and allowed yourself a time to feel it and then move on to avoid any permanent damage by any negative feelings that arose, then you can move on to the next steps on dealing with family or friends (or even Doctors) that don't seem to understand your pain nor sickness.
This post has become so long already that I will leave that for another day. I hope to post it soon. Thanks for reading this and be on the alert for the new post.