The patient and provider perspective of Managing a Chronic Disease


With so many advances in modern medicine most diseases in America are now termed "chronic", which in layman terms means it's not going away anytime soon. While working as an emergency room nurse, I did encounter true "acute" conditions, such as appendicitis, stabbings and broken bones, however most visits were for uncontrolled or poorly-controlled chronic conditions. I now work as a nurse practitioner in primary care, where most of my job is managing chronic conditions. Uncontrolled chronic diseases I saw in the ER often manifested as heart attacks, strokes, suicide attempts and limb amputations, and thus I understand the importance of managing a chronic condition carefully. On a personal level I have suffered for the past seven years from a chronic illness known as endometriosis. Where my pain was not debilitating enough to prevent me from working, there were and still are many days I was in complete pain and didn't want to get out of bed. Endometriosis is a diagnosis that often takes many years to determine. There is no blood test to confirm the diagnosis, and most often it is not caught on pelvic ultrasounds or CT scans. Most cases are diagnosed through a laparoscopic surgery, as mine was, showing that I had stage III endometriosis with multiple adhesions and lesions. The surgery did help alleviate some of my pain, but I still have days when I have constant dull aching pains in the abdomen and pelvis. My experiences with endometriosis has shaped my practice as a nurse practitioner. My advice to anyone living with a chronic disease is as follows:

1. Find a provider you trust

I know from personal experience this is easier said than done, however continuity of care with a medical provider will improve your health outcomes long-term. In many areas of the U.S. there is still very limited access to primary care providers, let alone specialists. Until the age of 12 I lived in a rural town with a population of 1,000 with only one primary care practice. I also lived in Alaska where there are many remote villages that have only have access to a visiting medical provider once a month. That being said, if you are lucky enough to live in an area where you have options in choosing your provider, take the time to select a healthcare provider you trust. It's especially important to select someone who takes the time to listen to your needs and is able to communicate to you about your medical care, which will improve your health outcomes.

2. Take care of your mental health

When your mental health is not taken care of your physical health will also decline. Often this is a snowball effect, and as the illness progresses so does the decline of mental health. Having a diagnosis of a chronic illness will in many aspects affect your mental health. Facing the frequent pain and infertility associated endometriosis often lead me to feel anxious and sad. It's okay to feel overwhelmed by a chronic disease, but know when to ask for help. Seek out professional help when you need it, ask for support from friends, or find a support group for people going through your situation.

3. Keep records

It's always okay to ask for copies of radiologist reports, labs, and progress notes . The more information you have on your illness to take to appointments, the more it will help your providers and you. Before I entered the medical field I didn't know how important it was to have copies of medical records and never asked for anything. Now when patients bring me charts with lists of medications and dosages, copies of their hospital records, and imaging studies, I am so happy because it makes everything so much easier in knowing the next step to take.

4. Be your own advocate

Unfortunately many medical providers are overworked, and don't have adequate time to give to their patients. This is not an excuse, but it's the reality of the current situation. During the process of getting to the diagnosis of endometriosis, I was brushed off at appointments when nothing came up on ultrasound. Once at an appointment when I asked a question regarding my ultrasound, I was told to "google it".  Your provider may not have the time to explain all the pathophysiology of your disease to you, but should be able to point you in the right direction (not google) of where to find it. Always ask questions about your care and treatment, and if you aren't happy with your treatment make it known to your provider. The more involved you become in managing and understanding your illness, the better outcomes you will have.

5. Give yourself a break

As with any chronic illness there will be good days and bad days. There are going to be days when life just is miserable. Give yourself time to rest and take a break. For me it was hard because I lived a busy life and I didn't want to accept that some days the pain would be too much. Emotional stress only will further exacerbate symptoms of most chronic illnesses, so the best advice I can give is give yourself time to rest and don't beat yourself up about not being able to do it all.

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