A letter to all Doctors, Specialists, Care Givers to ALL people dealing with Sarcoidosis
I am writing this letter to share my personal opinions and experiences from the Sarcoidosis Patient point of view.
There has been 3 stages to my disease process:
Initial presentation of signs and symptoms. Although some present with no symptoms and Sarcoidosis is discovered by accident, I am speaking about people who come to you sick. We don’t feel good and most of us know there is something really wrong. Most of us are firmly in adulthood and have not experienced ‘this’ kind of sick. Please do not treat us like children or hypochondriacs. I understand the conservative treatment you have been taught to administer, but if you really listen to what we tell you, maybe there will be a connection.
When you do tell us you might suspect Sarcoidosis, don’t let the information end there. Most of us have never heard of it, and let’s face it, it sounds very ominous. Although there is information out there talking about how it can be self limiting for some, the idea of feeling as bad as we do long term is life changing and frightening. This is the stage that can cause the most stress, feel the most damaging spiritually, physically and emotionally. We worry about ourselves, our families, our friends. Please do not discount the importance of patient education over anti anxiety meds, pain killers or other mood altering drugs.
I know Doctor’s have a hard job dealing with individual patients, there must be a huge amount of information to process. Just imagine how we feel. We just want to feel better and sometimes you are the only ones that suggest a path there. Whatever the treatment plan, please take the time to explain why you feel this is the best path for us. You have many more colleagues with more knowledge than us, please use that resource.
During this stage, we will have many questions, some will be answered, some just simply can not be answered. We understand that, sort of. If you at least try to educate us, we will be more dedicated patients that will come to respect and admire you for our care. We will tend to be more compliant with treatment and really try to manage our health. We will have less stress and hopefully reduce some meds that are needed. At this point, we are just too sick and overwhelmed with it all to really grasp what is happening.
If we are still seeing you, then it is obvious we are not responding to drugs and therapy. We appreciate that you are still trying to make us better. However, we may be angry at you also. We may question why we can’t get a handle on it. We may want second opinions. It is not a reflection on you. We have now started going to the internet and are starting to see that we are not so alone. There is more and more information out there everyday. There are lots of research studies happening and it gives us some hope.
This is also the stage where maybe we feel the most ‘crazy’. Things keep happening to our bodies and at this point, it is hard to pinpoint if it is the Sarc or the meds, or another disease process, as if we needed more. It is important that you document even the smallest of symptoms as it could become important later. Please monitor us closely right now as this is the time that will determine wether we go into remission or become chronic sufferers. Some reassurance that you are active in our care would be greatly appreciated.
We are sick and tired of being sick and tired. Because of our extended illness, our lives have been impacted greatly. We may have lost jobs, friends, family. We may be angry, sad, emotional, complacent, apathetic. We may not want to hear that we need to lose weight, eat better, exercise. I understand you feel the need to tell us that. Please keep in mind our individual limitations when you break that news to us.
We might be upset that we have to keep changing meds but if you explain that this disease and supporting meds react differently in different people, we might feel better about being guinea pigs. Being told the technical reasons for the med switching would be great too, at this point we are becoming quite knowledgeable about this disease. We might even be bringing information to you that we have found. Please do not be offended. It is better for us to feel proactive about the management of our Sarc. After losing so much of ourselves, it makes us feel useful.
We have now been on meds and trying to manage our symptoms for some time. Our bodies have changed, our personalities have changed, our lives have changed. we are not the same patient we were in stage 1. We know where we have been. We are living with chronic disease. We might need some direction on how we are supposed to live like that. We have our good days and we have our bad days. We feel more support from the community of Sarc sufferers because we have finally reached out to forums where there are people just like us. We are a little more comfortable in our skin but hopefully not done fighting this sucky disease. Most of us are grateful we are still alive. Some are more severe than others. Which brings me to a most important point of this letter:
Please do not make the mistake that only severe illness is debilitating.
Some of us appear okay, are able to work, take care of our families, and lead a somewhat normal life. It is not an easy road but it gets done. This does not mean we are not sick. And we still worry at some point that we may not be able to it all in the future.
Some of us are stable based on blood tests and clinical findings but are still debilitated. Most of us would never chose this situation but we are in it. Please recognize that we are unable to function in life the way we used to. We have to find a new normal. It is up to you to council us, listen to us, and point us in the right direction if possible. Your empathy means the world to us.
This is also the stage where we might not see you as much but when we do, it’s usually a doozy. Sarc is rearing it’s ugly head. Please be aware that having been through it over and over, we may have real fear. We may expect you to run all the tests, do a full exam and get to the bottom of it. We may expect more answers than we did in the beginning. We are more educated. Hopefully at this point, we have formed a healthy respect and bond for you and vice-versa. You should have no problem explaining and suggesting treatment plans.
We usually know the drill by now but may still be sad and angry over it. Don’t take it personally, we know you are doing all you can. Please keep researching for us so in the future we may have better treatment options. Please treat us as individuals. Please appreciate the fact we look to you for answers. Please do not dismiss even the smallest clue. Please forgive us when we are not ourselves.
Thank you for reading and caring. Please feel free to pass this along -LoopyLana