PH has set me back, but I am still a fighter and will never give up.

There’s a bittersweet moment when you receive a diagnosis. My diagnosis process spanned 40 years, so I felt ecstatic when I finally got some answers because the journey to get there had been so long. But then I had to navigate life with three chronic conditions.

In my early 30s, I spent several weeks in the hospital with pneumonia. Doctors were unable to determine the cause of my illness and initially diagnosed me with sickle cell disease. They referred to Yale New Haven Hospital, where I was diagnosed with lupus. After years of feeling misunderstood, I felt relieved to have answers but overwhelmed by what the diagnosis meant. I also feared what the future might hold.

After my diagnosis, I went through a period of adjustment. I had to learn my triggers, manage flare-ups, find the right medications and accept the reality of living with a chronic illness. During that overwhelming time, I prayed to God for relief and help on this journey. I had to reach deep within myself and remember that my identity is greater than my illness. My diagnosis is a medical condition that does not define me.

Then in my early 50s, my doctors thought I had two different autoimmune diseases before correctly diagnosing me with scleroderma. I felt like a quarterback getting sacked. It was a hard hit.

I often describe lupus and scleroderma as conjoined twins because their symptoms are so closely connected. Navigating two autoimmune diseases was frustrating, especially as I learned how one condition could affect the other. This increased my anxiety, depression and feelings of isolation. Every time I wanted to have a pity party about my future, I told myself to trust in God.

Adjusting to life with PH

After years of living with lupus and scleroderma, I was diagnosed with pulmonary hypertension about 18 months ago. My doctors are still trying to identify the cause of my PH so they can determine the most appropriate treatment plan.

Receiving a third diagnosis was emotionally overwhelming. I feared what it meant, felt frustrated by my physical limitations, grieved the loss of my independence and felt anxious about the future. I have always been an independent woman and needing assistance was emotionally difficult, especially because I’ve spent a lifetime caring for myself and others.

Short walks left me short of breath and my fatigue became much harder to manage. I had to adjust certain activities and exercises because of the swelling in my legs. I also experienced chest pressure, a racing heartbeat and palpitations that increased my anxiety. My loved ones did not understand my invisible illness, especially when I looked healthy but felt very sick.

I advocate for myself by reading all the materials I can find about lupus, scleroderma and PH. Since there is no cure for these connective tissue diseases, it is vital for me to stay informed. I have to learn how to live with them and understand how treatments continue to evolve. Education is your most powerful tool.

A message to the PH community

To anyone newly diagnosed, stay encouraged, find a medical team that listens and lean on your loved ones. Keep moving in whatever way you can. If walking around the house five times is all you can do, start there. Chair exercises and light weights at home can also help. The important thing is to do something and take it one step at a time.

Prioritize your health by keeping regular appointments with your healthcare team, taking medications consistently, reducing stress when possible and asking for help when you need it.

You can still live a meaningful life. Connecting with others who live with the same conditions has been especially meaningful to me. I have participated in many fundraisers and take every day as it comes. I find joy in reading, exercising, jazz and cattle dogs. God, my husband Richard Adams, my friends and my PHA support group have been my rocks through it all. PH has set me back, but I am still a fighter and will never give up.