Growing up with more than one genetic condition, I never gave much thought to the long-term effects they would have on my body. It wasn’t until I became an adult and started taking control of my health needs that I realized how these genetic conditions contributed to chronic illness and pulmonary hypertension. When I became symptomatic and could no longer do the activities I enjoyed, I had to start paying more attention to my body and advocating for my health.
Managing pulmonary hypertension is enough of a full-time job every single day. It becomes more complicated when I must manage other coexisting health conditions, too. Paying more attention to my body’s needs has helped me understand the mental and physical work that it takes to have some type of control.
Following are the top six struggles I face when trying to manage multiple chronic conditions:
1. Which bodily system is causing the symptom?
With multiple chronic illnesses, it is difficult to fully identify what part of my body is contributing to a particular symptom. It becomes even harder when two separate conditions have many similarities. With both lung and congenital heart conditions, it is difficult to tell if increasing fatigue is due to my heart or my lungs having to work too hard. My neurological conditions lead me to wonder if my dizziness is from neuro conditions, my heart rate, or oxygen levels.
2. Will this medication help one thing but make another worse?
Most of my conditions are managed every single day with multiple doses of medications, breathing treatments, and medical devices. Some of these treatments and medications help the symptoms they’re supposed to help, but in turn, they make other conditions flare up.
Taking a beta blocker for my heart rate helps me to avoid arrhythmia, but it also can make me feel more fatigued or upset my stomach. Even the breathing treatments that help open my airways impact my heart rate and make me tachycardic.
3. To which doctor should I address this question?
Having coexisting conditions means I have multiple doctors. When I experience an exacerbation of symptoms, I ask myself what doctor I should call. It’s usually hard to be my own judge of this.
4. Going to the ER feels like I’m on display.
Emergency room visits seem like I’m on display for as many specialists as possible. If I’m in the emergency room for stomach pain, I end up seeing neuro, cardiovascular, and pulmonary specialists. I’m glad they take proper precautions, but this can become frustrating when I’m in pain and just want my cramps checked.
5. The domino effect.
When one part of my body acts up, it can feel as if everything else ends up following. This is especially true for the bodily systems that are so interconnected. When putting more stress on the heart, the lungs have to work harder. When I have pain flare-ups, it’s difficult to breathe, and my heart rate is high. Sometimes it seems as if it’s never just one thing to control.
6. Doctor’s appointments feel like something I should get paid for.
A huge chunk of my week is filled with either getting tests, going to check-ups, or getting blood work. Because I see over a dozen specialists at least once a month, managing multiple chronic illnesses feels like a full-time job. That can be especially difficult when trying to maintain a social life and an actual job.
Managing chronic illness is extremely difficult both physically and mentally. It becomes even more of a challenge when multiple coexisting conditions collide with each other. It’s overwhelming to figure out which doctor to call, how to decipher where the symptoms are coming from, and how best to treat the condition. Making sure that doctors know all about my other health conditions, talking with them about the difficulty of managing them all, and keeping notes of flare-ups, side effects, and other concerns is a good way to maintain some control through the struggles.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.