Dear Medical Professionals: (Concerning the treatment of chronic illness patients)
If you are already a strong advocate for chronic illness patients, and understand that we deserve better treatment- thank you! We very much appreciate you. More than you could ever imagine. This isn’t directed towards you, but many of your colleagues really need to read it.
I understand that a lifetime of being one of the smartest people in the room can have an impact on one’s behavior. Being successful, saving lives, getting published, being recognized by your peers, and all the education and hours you put in to become what you are, all have a significant impact on your perspectives. How could they not? The effort you have to put in to become any type of medical professional shapes your whole life. It isn’t just a career, it’s a lifestyle.
The drive to be the best you can be, the competition in the industry, and the quest for ever-better methods of treating people, all create amazing people- capable of doing things that others can’t, many times with a life at stake. Unfortunately, all of those things can also make you less likely to act as “human” as the average person. Being right so often can make you forget that you CAN be wrong. Seeing the same ailments, day in and day out, can make you less likely to believe someone could be rare, or different, from your usual patients. So, when you run into a patient that is not at all normal, it can be hard for you to react any differently than you do with all the others.
We Need You SO Desperately
From someone with multiple chronic illnesses, who has been ignored by doctors during encounters more times than I can count- even though I am intelligent, have an extensive medical history & know my body very well, have had all the medical classes possible without going on to medical, or nursing school, and do my best to interact professionally, and reasonably, with them- those of us who are different desperately need you to slow down and recognize that fact. We need you to listen. We need you to do what you’ve been taught not to do- get personal and be human. I know it’s supposed to make you less able to care for your patients, but in these cases, not doing so, is making you torture us. You not understanding how these invisible chronic illnesses (use this link for many personal stories from people all over the world,) severe chronic pain, and symptoms, consume our lives, means we get no relief. Without real help, our quality of life is, at best, low, and often feels like it’s non-existent. Many of us question whether the pain makes life worth it.
There are days when we beg to just not be here anymore. Not because we are suicidal, but because we just can’t take it anymore. In those moments, death is just a way out of the pain. There have been plenty of chronic pain sufferers who have gone that route because it was just too much.
Most of you can only imagine pain from a “normal” perspective. If you don’t live with chronic pain, the pain you’ve felt has all been temporary. That’s the key. No matter how severe the pain, or what causes it, if it’s never-ending, eventually it will become greater than any temporary pain you can feel, because it has physical, mental, and emotional effects. Because I deal with chronic pain, I guarantee you I can handle any temporary pain because I know it’s ending. Knowing there will be relief because it will heal, or whatever is causing it will stop, makes all the difference when you’ve experienced pain that never leaves, unless artificially relieved.
You may be thinking “Well, since you can get artificial relief, that should mean both pains have the same effect, ultimately,” but that is not at all the case. With acute pain, the pain eventually stops once the illness has been cured, or injury healed. Then it doesn’t have to be worried about again, and it gets less the whole time the healing is happening, or stops as soon as the outside force is removed. Chronic pain happens until we get that artificial relief, and stays the same, or worsens, until we do. There is never a time it goes below whatever our baseline chronic pain level is, unless it has been done artificially with pain medication, or treatments. Never. That’s why it’s CHRONIC pain.
But, You Already Know This
I understand that you, as medical professionals, know the definition of chronic pain, and have learned about these conditions- but, somehow, you’re still dismissing us when we try to get relief. Those with invisible illnesses, such as Fibromyalgia, which affects 3%-6% of the world’s population (fmaware.org,) are very often seen as just having a low pain tolerance, being depressed, or mentally ill, even by medical professionals who are supposed to do all they can to help. Before medical research showed proof of diabetes, high blood pressure, high cholesterol, or any other condition that you can’t “see,” I’m sure people were skeptical, but eventually the research showed proof that these diseases exist, and gave us options to help them.
Knowing that fact, it stands to reason that the medical industry would recognize that even though a condition is hard to see & diagnose, that doesn’t mean it isn’t 100% real. Meaning rather than treating those of us with invisible illnesses like we are something to deal with quickly & get rid of, you should be treating us as someone that needs your help even more than most patients because our conditions consume our lives. You should WANT to do deep research, case studies, and anything else that will help you figure out how to help us. You should be making sure our symptoms are controlled to the furthest extent they can be with modern medicine. Even if that means making sure they get the treatments & medications they need, whether they can afford them, or not.
You should be fighting FOR us against all of the insurance & pharmaceutical companies, and lawmakers, because you are the only people who can really help us against them.
You are also the only way change will happen in the industry. It’s up to you to get the research done that we need to better understand these invisible illnesses. It’s your responsibility to force the issue and figure it out, whether it’s something that will make millions of dollars, or just save lives. There ARE cures out there for these diseases, and there are more treatment options & medications that can be developed that would work better than what we have now. We have to take the focus off of only worrying about whatever will turn the biggest profit, and put it on actually trying to solve these problems.
AND you have to be on our side for it to help.
We need you to be our biggest advocate, our weapon and defense against a society that doesn’t understand what living with this pain can do to us mentally, and how drastically it lowers our quality of life far below what most people would find acceptable. We need you to listen when we tell you what our bodies are doing, and believe us. The fact is, you ARE our only hope to make things better. Please stop letting us down. We need you.