My 5 Pieces of Advice for Anyone Living With a Chronic Illness

With so many advances in modern medicine, many diseases in America are now termed “chronic,” which in layman terms means it’s not going away anytime soon. Working as a nurse practitioner, I understand the importance of managing a chronic condition carefully. On a personal level, for the past seven years I have lived with a chronic illness known as endometriosis. Although 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 signs of the condition are unlikely to be seen on pelvic ultrasounds or CT scans. Endometriosis is 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, but continuity of care with a medical provider will improve your health outcomes long-term. In many areas of the U.S., there is still 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 can be a snowball effect, and as the illness progresses, so might the decline of mental health. Having a diagnosis of a chronic illness can in many aspects affect your mental health. Facing the frequent pain and infertility associated with endometriosis often makes me feel anxious and sad. It’s OK 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 OK 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 my endometriosis diagnosis, 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 might 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 to give yourself time to rest and don’t beat yourself up about not being able to do it all.

Follow this journey on Left Coast NP.