Today starts my new Sava Wellness Community: Interview Series! I have the joy of interviewing Courtney (she/her/hers). Courtney works as a senior scientist, is chronically ill, is a person with an invisible illness and has recently started to refer to herself as disabled. Please read on below to see what we talked about!

Hello Courtney! It is wonderful to talk with you today. Could you please tell us a little about yourself? 

I live in the hot and humid state of Florida, in Tampa Bay, which is considered central Florida, on the West coast. The winters are very comfy, though!

I have a great husband, Rick, whom I have known since 2006. We have 2 adopted cats, who have lived with us ever since they were very young and little. They are senior cats now, and have been with us through thick and thin! We definitely love them like family and don’t know what we’d do without them. 

I don’t have a hobby, at the moment. In the past, I have done some adult coloring books, dabbled in some crafts, and done some cross-stitching and reading. Now, I like to relax by watching streaming series or movies, and I like to keep up with the latest Disney news in the theme parks and beyond!

Do you have a job outside of your chronic illness and want to share about it? (We all know that chronic illness is a full-time job itself!)

I am a Senior Scientist. I assist in Quality Control for pharmaceutical products, to ensure that they are safe and effective to be on the market. I enjoy being challenged and knowing that I am good at my job, but also take pride in knowing that I have a hand in helping patients in need, with everything from common Advil to cancer drugs and even some autoimmune therapies!

Would you like to explain what the terms chronically ill, a person with an invisible illness and disabled mean to you and how they may have changed your perspective?

It is hard to admit that there is something wrong with you. It is sad, frustrating, and you feel you have lost some control. It can be isolating, but can also connect you to other people who identify the same way and are dealing with similar issues. The illness/disability forces you to change things about your life—your lifestyle, eating habits, what you physically can and cannot do; and it can either negatively or positively affect relationships or friendships. It can be hard to admit that you need help, and hard to explain complicated things or things that others cannot see/observe. It has made me look at areas for accessibility; for example, ramps, railings, benches, how to access mobility aids, etc.

 Do you have a diagnosis for your symptoms? 

Yes, and no!

For your diagnosis, can you tell us what it is and describe what that means for you? 

I have a diagnosis of fibromyalgia, and preliminary or suspected PsA (psoriatic arthritis), with HS (hidradenitis suppurativa), and in general, chronic inflammation. I also am diagnosed with diabetes type II, high blood pressure, issues with tachycardia, as well as dysmenorrhea and suspected endometriosis. The dysmenorrhea/endometriosis seems like just such a regular part of my life, since I have dealt with it since my teenage years. The newer diagnoses of high blood pressure and HS do not bother me very much; but I have anxiety and some very mixed strong feelings about the other newer diagnoses of fibromyalgia, PsA, chronic inflammation, and diabetes. They are a bit scarier and frustrating, and can feel depressing.

Does having a diagnosis help you? 

It helps to put a name to what you are feeling and experiencing, and to hopefully, know how to manage it and treat it.

How long did it take for you to get a diagnosis? 

The autoimmune and fibromyalgia took about 6 years of me suspecting something was wrong, before a doctor finally tested me. As for the endometriosis, it requires exploratory surgery, and the surgery was offered to me at age 20, which is now 23 years ago; but when I have tried to request the surgery in the past 6 years, I have been refused the surgery. 

If you don’t have a diagnosis, can you please describe your symptoms? 

I have lots of fatigue; muscle, joint, and tendon/ligament pain, muscle weakness, nausea, some dizziness, high/fast heart rate, palpitations, shortness of breath, itchiness and some rashes, headaches, body aches, some instances of numbness and tingling, loss of dexterity in hands and other parts of my body, such as legs. I also have urgent urination, and sometimes very intense pelvic pain that radiates to my lower back. 

Does not having a diagnosis affect how you live your daily life? 

It can feel very scary to feel intense pain, or heart palpitations, or other serious symptoms and not know what is causing them. 

When did you first realize that you had chronic illness and how has your journey been since then? 

The endometriosis was suspected from about age 20, and it started to make better sense around age 35 (8 years ago) when I had increasing instances of pain. As for the fibromyalgia and inflammation/autoimmune disease, I suspected something was off around age 34, but it didn’t really start clicking for me until about age 39. I was first tested at age 40, right in the middle of COVID-19 in 2020! There have been many doctor appointments not only with my primary care/family doctor, but with specialists such as rheumatologists, lots of bloodwork, and a few other tests, including things like X-rays and ultrasounds. Sometimes, you feel validated and other times, you feel you are back at square one and you are unsure of what is really going on or if the diagnoses are correct.

How has your experiences of the world changed since your symptoms started? 

I like to stay at home more. Sometimes, I feel like I am missing out on experiencing things. I value my rest, and don’t feel that I have to be as productive every day of the week.

Which of your symptoms do you find the most debilitating and why?

The fatigue is the hardest part. However, the muscle pains make it difficult to walk or exercise, or to have stamina for activities. Currently, my high heart rate and shortness of breath make me very cautious to even do simple chores around the house, but I also have to be extra-careful in the heat and sun.

Can you describe what a bad day symptom-wise looks like to you?

For me, I have lots of aches and low-grade to medium pains or overall body aches, and might not be able to walk comfortably or might need to limit the use of one arm, or favor one leg on a certain day. I will also feel very tired or fatigued, both in the sense of needing sleep and being lethargic with no energy. Sometimes these symptoms are accompanied by a headache.

When you have a good symptom day, what do you like to do?

I try to do some extra chores or go for a walk, or maybe do something I was putting off, like going shopping or getting a pedicure.

What has been the most helpful for you as you have gone through this journey?

Having people to talk to, and honestly, having easy access to Google and articles from entities like Mayo Clinic, so that I can do some research and I can be able to advocate for myself. It has also been helpful having the support of friends and family, and having doctors who are finally listening (somewhat!) and willing to suggest some trial-and-error therapies. I am also grateful to have a desk job as of 2 years ago, so that I can stay off of my feet and my body can be in a more relaxed state for the majority of the day. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

The biggest things are that 1) Most of the symptoms are “invisible,” and 2) There is no easy fix. You will not magically get better, especially with diet and exercise, as so many people like to suggest! You may start to feel better or mitigate some symptoms, but nothing seems to be a cure-all, especially diet and exercise, or yoga. Much more research needs to be done. There is a lot of trial-and-error to try to mitigate symptoms. And, 3) Weight is not an indicator of health and BMI is an outdated and problematic (i.e. racist, ableist, misogynist) measure of someone’s health. Thinner people may have illness or be healthy, and overweight people may have illness or be healthy. We have to do a better job, as a society, at looking past people’s weight. People do not always have control over their weight or their health, nor should they be judged negatively for being ill or unhealthy.

Thank you Courtney! 

You can see Courtney’s love for the theme parks in her picture and description of it. The picture shows me tired and a bit achy, but making an effort to do some things outside the home, like visit a Disney resort (Wilderness Lodge) for the holidays. Taking it slow, and enjoying the details. This is a relaxing resort, with cozy fireplaces, comfy chairs, a babbling brook, and comfort food like Mac n cheese and BBQ meats! Being in a happy zone like this refreshes my soul.

You can find Courtney and her husband, Rick, talking about restaurants and visiting theme parks on the “Tall Guy Talks Travel with Rick Dougherty” YouTube channel and Podcast. Please subscribe to the YouTube here, and also follow along on Instagram @rickdoughertytgtt and Twitter @rick_ear