If you live with any chronic illness, you have most likely heard these or similar phrases in the past:
“We see something on your CT Scan that should not be there.”
“We are concerned about your kidneys.”
“We have to investigate why you are having chest pains.”
“I don’t know if your hair will grow back.”
The above words that come from your doctor, or are written in an email, or a text can instantly do one of two things. Either your heart will start pounding or it will feel like it has stopped. The words, and phrases similar to these, are what a chronically ill person hope never, ever to hear. And yet in the course of a lifetime, most of us have heard at least one or more of these type of sentiments.
And, the way we react to these types of potential crises is based on how we have historically handled ourselves emotionally.
Living with a chronic illness such as lupus is like living on a roller coaster. At times, we feel like we are headed in the right direction and everything is running smoothly as we head straight up. Then suddenly, without any warning, with the unpredictability of our disease, we plunge deep, so deep into the fathoms of despair and fear. We never know when the fall will come. Our bodies go into the “Fight or Flight” mode. We become ready to do battle or we want to run away – far, far away – in a fit of denial. We soon come to the realization, we cannot run. We have to stand tall and face our fears. We have to handle whatever comes our way.
So how do we react…or better yet, how can we better react during a crisis in a way that helps us through?
First, as a Warrior, it is important to call upon your trusted soldiers – your support system. Let them know what is going on. A frustration at this time is the tendency for some to start asking you lots of questions. This is when you are just trying to assimilate the health problem yourself whereas you may not have the answers. It is too premature, too early. Let the ones who question know at this time, you are just seeking support and comfort; when you know more, you will share it with your “army”.
Secondly, speak to your medical experts so you fully understand what is going on. If there is something you don’t understand, ask questions until you do. Echo the information back – repeat the pertinent information – to the doctor or PA to ensure you understand.
Ask what the next steps will be. Are there any tests or procedures you will need to undergo? If there are new meds, what are the side effects? It is always wise to take a second pair of ears with you. When you are upset, you may not retain all the necessary information. An extra set of ears can listen, take notes, and ask questions you have not thought of or forgotten. It is always comforting to have a personal advocate at your side during this type of discussion.
Third, schedule any appointments you need as soon as possible. This will give you the sense you are actively engaged in your care. It will give you confidence that even in a crisis, you can do the right thing. Write down your appointments with the time, the doctor’s name, address, and phone number. Do not just assume you will remember.
Go prepared for your tests or procedures. If there is a prep, make sure you follow the directions exactly. If the instructions tell you to stop taking vitamins, meds, or OTC’s in advance, do so. If you are told to be ‘NPO’, that means no eating or drinking until afterwards. Wear comfortable clothing and shoes. Make sure you have a driver if needed.
Afterwards, go home, eat something, and relax. It may take several days to get your results. It is important to discuss the test results and labs with your medical expert. Do not feel you can interpret the information yourself. Depending upon the results, it may even be necessary to go through additional tests. This is not unusual. If you wish at this time, inform your “soldiers – your support system- what is going on, if you are up to it.
Don’t Forget To Engage in Self Care Also At This Time
During this time, it will be most helpful to not only address your physical concerns but your stress level, your emotionality, as well. Take the time to meditate, use mindfulness, or journal. Whatever you find calming or soothing to your psyche, do it for yourself. Give yourself positive affirmations to empower your beliefs in yourself.
If you live with a chronic illness, then you have likely had plenty of experience getting through difficult times. Know that you have walked through the fires multiple times, and still have come through unscathed, each and every time. That is why the mantra, “This Too Shall Pass” is so empowering. It states very simply, “I will get through this crisis like I have every single one in my past. That is what I am capable of doing.”
If you live with a chronic illness such as lupus, you are incredibly strong and brave. You are capable of so much. You can handle so much, because you have experienced so much. You are an amazing human being.
Believe it. Feel it. Accept it.
Have you discovered any tips over the years to help you in a health crisis that you would love to share? We would love to hear them below and know others would love some tips and advice as well!
Donna Oram, MSW, ACSW is a Lupus thriver and the author of “When Lupus Throws You For A Loop” available on Amazon. It is about learning how to live with the complexities of lupus, learning to cope, and accept your illness into your very being. Donna has a passion for writing, and for volunteering and advocating in the lupus community. She has been a Lupus Warrior for thirty years and is a retired master’s level social worker. She and her husband of 56 years are blessed to live near her children and four grandchildren.