It’s not often something makes me literally burst into tears uncontrollably- but, it happened today. I was catching up on a TV show, yes a TV show, of all things. This time I wasn’t reacting emotionally because of how the person was being treated. This one was because the actress portrayed the very real desperation we feel when her character was informed they couldn’t find anything wrong. She showed so much emotion that I had personally felt that it overwhelmed me for a moment.
So many of us with Fibromyalgia, and all other invisible illnesses, have felt that desperation. It’s an awful, lonely feeling. You feel so crazy because tests come back with no significant findings for your pain, and all the other symptoms you have to deal with; or, they find things, treat them, and yet you still feel horrible. It’s frustrating, enraging, and humiliating. Some of us have had to go to doctor after doctor to find someone who will even listen at all. Especially if we’re young.
People don’t like to believe you have serious medical issues unless you’re over 50. The older I get, the more this is quite obvious, because each year, doctors are more willing to listen and do testing without my history, and without an argument. These days, once they see my medical history, I really don’t have to argue too much because I have so many surgeries and diagnoses. I do still have to deal with ignorance when dealing with doctors who aren’t familiar with my history, and people who are uneducated, or misinformed.
I used to feel confused and ashamed about what those type of people said to me. It devastated me at times, and really made me question myself for awhile. So, I went through all the treatments, and followed all the advice those people gave me. I listened to all their theories about losing weight, changing my diet, and exercising more. Used all their medications, and let them perform all of their procedures. I allowed the doctors to do whatever they suggested, thinking they knew best with all of their education and training. I ended up passing a ridiculous amount of kidney stones, for months, along with kidney infections, urethral stents, and lithotripsies. I also lost my gallbladder, developed more cysts on my ovaries, and ended up with pancreatitis, and on a ton of both narcotic and non-narcotic medications.
It was awful, and one day, I was just done. I was done listening to everyone else. I decided it was time to start standing up for myself. I fired my doctors, got new ones, and changed my entire perspective and approach. It was the best decision I ever made. No, I didn’t fix all of my problems and cure my symptoms, but I did improve my mental and emotional state. I didn’t accept just any new doctor, either. In fact, I am still looking for a really good medical team, but it’s because I won’t settle. I go to an appointment, and gauge their reaction to my conditions. If they aren’t to my liking, I move on. I will only work with doctors who are up to date in their knowledge of Fibromyalgia, because it’s the least researched of my conditions, and it’s important they have accurate information.
If they seem like they just aren’t well informed, I will even go so far as to print out accurate information that is from a credentialed source that they can’t deny. If they have a negative attitude, they are immediately dismissed. See, my perspective has changed so much that I have decided I no longer have the energy, or time, for the games of trying to convince doctors to educate themselves. It’s their job to want to properly treat their patients and know the newest methods of doing so. If they aren’t going to do the most basic function of their job, I want nothing to do with them.
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I’m no longer wasting my breathe trying to convince people who want to remain uninformed. I will raise awareness, but I will not attempt to persuade once they’ve seen the factual information. There is a huge difference between those two things. I will walk away. If people don’t want to look at the valid research that is available, and try to understand it, then they aren’t going to be able to understand my life at all. Why should I want those people in my life? I decided I didn’t, and it freed me from so many of those horrible feelings I used to experience.
I LIVE this. I know it’s real, abnormal, and painful. I know the average person would be in the hospital begging for pain meds for what I call a 3 on MY pain scale. I know that I have conditioned myself to not black out from pain and nausea that would make the average person lose consciousness, and can stay calm and focused when others would be hysterical. I’ve had to learn all of these things and condition my body to handle them because the alternative is unacceptable. I don’t need validation from anyone else. I will advocate for myself because someone MUST. All of you need to, too. I’m not suggesting being arrogant and uncooperative with your medical team. Asking questions and doing your research is important, but you have to recognize the limitations of your medical knowledge, and know when to back off and listen to the professionals.
When going to new physicians, ask what their medical opinion is of Fibromyalgia, or whatever condition you have. If you don’t like their answer, either educate or move on. Don’t waste time if they aren’t willing to say 100% that your condition is a valid one that requires staying up-to-date with the latest research in order to properly treat. The doctor you need WILL be able to admit that research is still being done, and is willing to try newer methods to manage it if the older/average methods aren’t improving your quality of life. You deserve to be treated by a medical professional who is willing to do whatever is needed to truly help their patient.
It’s sad that it has to be this way, but we really must take an active role in finding the RIGHT doctor, and managing our health. In some areas, it’s even harder to find a good doctor. In those places, physicians either choose to remain close-minded about the new research that goes against what they’ve believed, or they are in an area that has been seriously affected by the opiate crisis, so all of their focus is on curbing the epidemic instead of learning how to recognize and treat invisible illnesses.
Some people may be able to find a doctor in their local area that has advanced their knowledge of lesser understood illnesses, but others may have to travel quite far. To me, it’s worth the travelling to find a doctor knowledgeable and willing to listen. In some cases, you may only need to do major appointments in person, and the rest can be done virtually. If you’re fortunate enough to have good insurance, you may even have the option of having long-distance care covered. Look into the fine print of your policy to see what options you have.
If the option to travel isn’t available to you, my suggestion is to look for newer doctors who are freshly educated from an institution whose curriculum teaches accurate information about your condition. You can join local support groups and ask for recommendations, too. They may know of someone in the area who is good. Mainly, you want a primary physician and a rheumatologist. There are multiple sites that rate doctors online. Go read those reviews to get an idea of the doctors character. It can be a very long process, but not settling for a doctor who won’t properly evaluate and treat you will make all the difference in your quality of life.
Even once you find a doctor and treatment plan, you must stay active in the management of your health. Having a backbone is also a must. Our gut instinct can a very important, powerful tool in our arsenal. Your brain knows when something isn’t right. It’s connected to your body and already knows when something isn’t right. It knows exactly what’s happening, and where, we just don’t have the necessary knowledge to know right off exactly how to interpret the information. Our gut instinct will just tell us that something is wrong. LISTEN TO THAT FEELING.
Obviously, you want to be reasonable and logical about listening to your gut, but if you have a persistent nagging that something isn’t right- bring it up to your doctor. Earlier, I told you about when I fired my doctors and changed everything. If I hadn’t, I may not be here today. I had been injected with a medication that could have varied side effects. I was scheduled for three injections, each a week apart, but something told me to cancel the second one. Tests came back the day after it was scheduled showing that my gallbladder needed removed because it was causing pancreatitis. It was caused by the medicine. If I had gotten the second round, there’s no telling if they could have saved my pancreas. You can’t really live without one of those- so listen to your instincts and protect yourself.
Our medical teams are extremely important to our care, but we are the number one tool in our arsenal. Advocate for yourself. Squash the shameful feelings because this is real. Your pain is real. All the complications and symptoms you battle are real. You deserve love, understanding, proper treatment, and compassion. They call us warriors because we have to fight for ourselves against others while also battling our own bodies. No matter how weak you feel on your worst day, you’re stronger than many on their best.
Raise awareness, and inform the uneducated, but don’t waste energy on the skeptics. They aren’t worth it, and you need to focus on feeling the best your body is capable of so you can live your life and be there for those who deserve to have you around. Love yourself. Take care of yourself, and don’t try to live up to the expectations of society. Take a break, Its OK to take a break. You are different, but if anything, all it does is make you even better because you probably have a deeper understanding of things than others. Embrace that.
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