When I read this article…I thought it perfectly and entirely summed up what others need to know about me because of my chronic sarcoidosis. All eight items describe me and it’s as if the writer reached into my head and stole my private thoughts. Number six is especially true for me. I hate to ask for help but more than that, I hate the thought that others might believe I am weak, so I soldier on and sometimes it gets very very very lonely.
As “Sarcoidosis Awareness” month draws to a close today for another year…
We need to hang on to hope.
We need to keep fighting for our lives.
We need to keep striving for recognition.
Our experience is devastatingly real.
Our journey is long and often far too lonely.
We need to keep finding each other for support.
We need to educate the ignorant.
We need better treatment.
We need a cure.
Remember that while we are rare, we do exist.
We need not be forgotten.
When I was newly diagnosed with sarcoidosis, I was scared and overwhelmed. I had never really been sick before and I didn’t know what to expect. So this post is dedicated to anyone who has recently been diagnosed. These are all the things I wish someone had told me then.
- Don’t panic.
- Educate yourself about the disease. It’s likely you’ll end up knowing more about the disease than a lot of doctors do.
- There is no known cause or cure. Treatment is aimed at minimizing harm to organs and symptom relief only.
- The side effects of the treatments for this disease are sometimes harder to manage than the actual symptoms of the disease.
- It can take a while to get a proper diagnosis. Don’t be surprised if the word cancer comes up. Sarcoidosis mimics a lot of other diseases.
- The only sure diagnosis is through a biopsy, but sometimes ruling out everything else will get you the answer, too–just not definitively.
- If a doctor blows off your symptoms…find another doctor.
- Learn to advocate for yourself with medical professionals and always take someone with you who you trust to doctor appointments. That person wll hear things you don’t and can take notes for you.
- Sarcoidosis can impact any organ. It’s not a lung disease.
- Even if sarcoidosis is not impacting your eyes or heart, get both examined, anyway; and then be sure to get regular eye exams annually, no matter what.
- You will have good days and bad days. Don’t let the bad days get you too down and enjoy the good ones.
- Even though having this disease is disruptive, strive to maintain some normalcy.
- For a large number of people, this disease does go into remission: so you won’t know for sure for yourself for a while. Be patient.
- Don’t believe everything you read on the internet about sarcoidosis.
- If a treatment sounds too good to be true…it probably is! Watch out for “snake oil salesmen” who promote such things.
- Keep your sense of humor. In fact, expand your sense of humor.
- Connect with others who have the disease so you don’t feel so alone, but don’t assume whatever is happening to them will happen to you. This disesae is very invidual.
- Expect people to tell you that you look good and to be dismissive of your experience, but don’t take it personally. They don’t know any better and you need all your energy to go into taking care of yourself.
- Easier said than done, but try to avoid stress.
- Many people with sarcoidosis also have sleep disorders: so ask about getting a sleep study done.
- The fatigue that comes with this disease is powerful and lingering. You are not lazy.
- Sometimes the best specialist to help manage all the strange and sometimes vague symptoms of the disease is a rheumatologist.
- Examine your diet and eliminate foods that make your symptoms worse.
- Try to find a way to get regular exercise as it can help manage some of the symptoms.
- Don’t feel guilty when you can’t do something.
- Accepting that you have this disesae is a process. Be kind to yourself.
- Get and keep copies of all of your medical records.
- Remember that no matter what this disease does to you…you are still YOU!
Sarcoidosis presents some serious medical challenges for the medical community because so many of them seem to know so little about it but also for the patients who have it because they are often too easily dismissed by the very practitioners who are supposed to help them. Sarcoidosis certainly has some “classic” symptoms; a dry hacking cough, unexplained low grade fevers, night sweats, shortness of breath, wheezing and swollen glands. These are all the hallmarks of sarcoidosis…the symptoms everyone seems to know about…even ignorant doctors. A quick internet search gives you this information too.
Yet, sarcoidosis is a complicated disease that can impact any organ and therefore presents any number of odd symptoms, symptoms that are often misdiagnosed as MS or lupus or cancer or psychiatric issues…as in all in our heads. Sarcoidosis can cause kidney failure, eye pain and central nervous system issues including facial paralysis. Sarcoidosis can enlarge the liver and spleen and it cause cause joint and bone pain. It can also cause skin lesions and complications with proper cardiac function. Having sarcoidosis often reeks havoc on the body causing secondary problems like nerve damage and arthritis.
It’s really important when you have this disease to be educated about it and all that it can do to your body and the ways in which these things happen. It’s important because your medical doctors will often overlook these things because they are not educated about this disease or they will simply blame every medical problem you do develop on the disease when something else could very well be wrong.
It’s easy for those of us with this disease to do the same thing. We blame every new medical problem we have on our sarcoid and sometimes do not seek the medical treatment we should for something else that could be equally as serious. It’s also tricky to know exactly when to go to the doctor because with our constantly misfiring immune systems and the fact that most of us are on some kind of immune suppressing drugs, we do not heal like “normal” people. And let’s face it…we are also sick of going to the doctor!
But, it is important to be well educated on this disease so that you can make good decisions about when to seek additional medical care and when not to worry. A good general rule of thumb is to seek additional care every time you experience a new symptom and while you want to let the doctors in your care know that you have sarcoidosis, be sure that they are thorough in their examination and evaluation of your medical needs. If you feel your concerns are being inaccurately blamed on having sarcoidosis, push for addition information on the doctor’s thinking and be a strong advocate for yourself.
It’s easy to use this disease as a scapegoat for every thing that goes wrong in our bodies. We do it and so do the doctors who care for us. Sometimes, sarcoidosis is the answer and sometimes it isn’t. Whatever the case may be, being educated about this disease is going to help you be your own best advocate when dealing with a new doctor or when a new medical concern arises.
For the month of April, I will be sharing educational information and personal insights about this ridiculous and rare disease. If these efforts provide even a small amount of enlightenment for those who are newly diagnosed or for those who love someone with this complex and invisible disease, then it will have been well worth the effort.
Let’s start with this…
A Simple Explanation Of Sarcoidosis:
Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. This disease affects your body’s organs.
Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.
These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is gone, the cells and the inflammation go away.
In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.
Please stay tuned for more…it’s going to be an interesting month!
To know truth is to be educated.
To know truth is to be open.
To know truth is to be accepting.
To know truth is to be kind.
To know truth is to be informed.
To know truth is to occasionally be alone.
To know truth is to have integrity.
To know truth is to be honest.
To know truth is to sometimes be uncomfortable.
To know truth is to fight ignorance.
To know truth is to show respect.
To know truth means not having to apologize.
To know truth is to be wise.
To know truth is to be free of bigotry.
To know truth is to be bold.
To know truth is to be free.