July is Chronic Disease Awareness Month making it a great time to talk to the people in your life that have chronic disease or chronic illness. Also, taking the time to learn more about different conditions and how they affect people will always be appreciated. You can look at past Sava Wellness Community Interviews to learn more about a wide range of conditions and perspectives!

In this month’s Community Interview we talk with Tiffany about her diagnosis’ and community engagement.

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

I live in Philadelphia, PA. I moved back home during the pandemic with my mom, and honestly it’s the best decision I’ve made in regards to where I live. I couldn’t imagine going through this journey living alone and especially without my mom, who also has chronic pain. 

My favorite hobbies by far have to be helping and interacting with other people. 

I am a very social person who loves to give back, so following my return from studying away in LA during my Spring semester at Temple—I started my community service organization Bosses Give Back. 

And ofc I have to mention my Sims. I’ve been playing since 2nd grade and on good and bad days, I rely on it. 

If you have a job outside of your chronic illness/disabilities (we all know that chronic illness/disabilities is a full-time job itself!) would you like to share about it?

While managing chronic illness is certainly a full time job, I have found solace in being able to create a lane for myself as an independent contractor given my experience and college degree in Strategic Communications with a concentration in Public Relations. I have a few clients and projects that I “work” with who bring me great joy, in addition to keeping me on my toes, in the seasons when I’m able to engage with them. Additionally, I’d say my community service organization Bosses Give Back, that’s helped low income, underserved populations since 2019, also keeps me busy. If we’re not engaging with the youth via programs, tabling at a community event, or hosting our own event of some sort that invites other orgs—BGB does our best to stay salient and supportive in and to the community.

What terms do you like to use in relation to your illnesses/disabilities?

Chronically ill. Yes – tbh this one is simplest to say. The easiest way to describe it is because I am ‘Ill’ ‘chronically,’ haha. But other terms occasionally are used. 

Disabled. Yes – this is what I use as my occupation at times. When applying for certain things, there aren’t many boxes that I could fit into other than using the additional line/space and filling in simply: disabled. 

A person with disabilities. Occasionally, lol. Again like the first one, this is the term that technically applies being a person who has conditions that disable them [to an extent], but I still try my best each day. 

A person who is chronically ill. Yes – this is the term I’d like to get unaccustomed to using since as a believer I want to stop claiming disabled as my identity, and simply state that like I just said above, I have chronic conditions that at times disable me to an extent but I persist and give my best each day. 

Do you have a diagnosis for your symptoms?

Phew what a loaded question for someone with many many diagnoses and symptoms, haha. But the ones most impacting my life are CRPS, fibromyalgia, Endometriosis, Adenomyosis, ORG-CKD, and Migraine. I’d guess I’d say though I’m fortunate in terms of most women who have endometriosis, because from the time I started experiencing symptoms I would say in 2020 I only had to wait until 2022 to get an official diagnosis with surgery; so two years. I was persistent in getting a diagnosis because I knew daily pelvic, vaginal pain wasn’t an option and after many different GYNs, I was fortunate to meet my current team. And I am someone that greatly believes that having/knowing the diagnosis impacts your care. 

ORG-CKD is obesity related form of kidney disease which I was diagnosed with through biopsy this year. It impacts my diet and activity greatly, because it messes with my sweat and thus requires bp meds in my case.

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

Despite the fact that I have been experiencing migraine since I was in middle school—I first realized that I truly had chronic illness in 2014 after a car accident injury resulted in my diagnosis of Complex Regional Pain Syndrome [CRPS] initially in my right arm. I would best describe things as a whirlwind since because following participating in the Amplified Pain Program, things have improved in some respects then the CRPS, now central sensitization, began to invade my other conditions. For example, the pain I feel from the endometriosis certainly is excruciated by the amplified pain condition I experience. And the fatigue from the fibromyalgia when mixed with the complications from migraine are no joke. While most cases of CRPS don’t spread to the full body, when you have other painful conditions, you are more susceptible than others. So once I was diagnosed with Adenomyosis actually first, I started instantly experiencing pain and have since had two removal surgeries for endometriosis as well as a presacral neurectomy. In the summer of this year, I’m having my third removal surgery and hoping for the best. 

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

Honestly everything about how I experience the world has changed since my symptoms started. In the beginning, I initially coddled my right arm from being touched because I was afraid of the sensation it might cause when bumped. Yet, once I entered the Amplified Pain Program, they made sure I broke out of that. Then once I started down the journey with Endometriosis and Adenomyosis, everything about how I view the world began to change. Women are not treated fairly, point blank period. From the amount of money that’s allocated into research on women’s health conditions, to the way women are listened to in their appointments—we are not treated equal to men. And the latter definitely affected me from the moment my symptoms started. It took me 6 GYNs to find the surgeon-doctor I work with now and I know that had I not advocated for myself, my journey could have been a lot different. 

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

Honestly this question is probably the most difficult to answer because of the sheer number of conditions and symptoms that I experience each day. I think though, I would say the experience of having CRPS is the most debilitating because when most active, it feels like my right arm (and at times other areas of my body) was doused with gasoline and set on fire. Absolutely not normal, and absolutely refractory to medication meaning I have to wait until the sensation passes. Sometimes the feeling induces tears, but I try my hardest to relax and remember that I’ve been through it before and survived so I can do it again. You know, mind over matter. 

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

Bad symptom days can vary in severity depending upon which symptoms are bothering me— however, on my absolute worst days, I am often overwhelmed and overstimulated. They typically start out with me noticing discomfort deep in my bones upon waking up, and needing to lie in bed for a minute or two before moving. Then, when I do go to sit up, I notice just how tight and restrictive my muscles and most major joints feel, making it very difficult to fully get up. Once I do I make my way to my mom’s room, where we spend most bad days together watching television or movies to attempt to distract from the pain. And throughout the day, my appetite is sadly altered so I rarely eat. 

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

On good symptom days, I try to modulate my energy the best I can but I will admit that sometimes I do get a bit carried away, haha. If in the days prior I’d been doing a lot or I have a lot to do in the days to come I try to stay home and relax in bed. Whether I’m working online or actually spending time in my house doing a little housework, I try my best to do that. However, if it’s a really good day or I am already planned to go out and my symptoms are manageable, I try to make the best of my time and enjoy the loved ones I’m spending it with making memories and being present. 

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

Probably my cellular phone as that’s not inaccessible!  By having access to, and utilizing the internet I’ve been able to make sooo many friends with other individuals who have similar experiences as me. I have made friends that have grown as close as family that I’ve never met purely from the internet!!! And I love them, with no doubt that they love me too. Additionally, I’ve been able to be connected to Facebook groups and information that I otherwise wouldn’t be able to access or even know about! 

I remember hearing the term “your phone is your million dollars,” and I’ll never forget nor disagree with it because I know between the career, business, and social opportunities available—I love my baby, lol. 

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

Chronic illness in general can happen to anyone at any time . So I like to think that this world will become a better place when people begin to listen to us as we express our experiences.

People have heard of things like asthma and diabetes well Endometriosis is just as prevalent and common. Yet, most have never heard of the condition unless it affects them or someone close to them. I do my best to advocate online via my Instagram pages and through the Chronic Disease Coalition; and this year, I was the Pennsylvania sponsor for Chronic Disease Day Proclamation from the Governor of Pennsylvania. 

Thank you Tiffany!

You can follow Tiffany on Instagram @tiffanyalana and @alanasjournal_

You can find information about her organization at www.bossesgiveback.org on Instagram @bossesgiveback and Facebook @BGBBabes