Voices of the PsA Community: Hear Brittany's Story
Psoriatic arthritis (PsA) is a unique and misunderstood chronic condition. Lack of awareness can mean a lack of support, physically and emotionally. This missing support often leads to feelings of loneliness, depression, and anxiety.
Will people ever understand? Are you doomed to manage this pain and emotional burden alone? The answer is no. While PsA is a challenging diagnosis and has a severe impact on quality of life, there are other people out there who understand. There is a community of support full of voices just as individual and important as yours.
Hear Brittany's story
The Voices of the PsA Community article series aims to highlight those unheard voices and raise awareness of the uniqueness of PsA and all that comes with it. After all, it takes just one voice to let you know you're not alone.
It is when we choose to be vulnerable that we find ourselves at our bravest. We're grateful for those community members who offered their remarkable and singular perspectives – including Brittany. Let's dive in to her answers to our questions.
How can bringing more awareness to PsA help improve the lives of those with the condition?
Unfortunately, I feel that many people tend to undermine the strain that PsA places on us. I have heard various comments belittling the symptoms that I face on a day-to-day basis.
Additionally, there have been individuals in my life that have questioned the validity of my illness since they cannot “see” the amount of pain that I’m constantly in. Even though this upsets me since I firmly believe that no one should have to prove their illness to anyone, there are days when I actually appreciate having an invisible illness.
Mostly, my psoriasis has been classified as severe, but many areas are coverable. This way, no one can see the struggles that I face on a daily basis. I don’t desire attention, nor do I expect the world to revolve around me because of my disease.
Rather, my expectations are to be reasonably accommodated for my disability whether it appears that I have one or not. An example of this would be coworkers actively learning about PsA to better understand how they can help accommodate me or loved ones being understanding if I need to cancel plans due to a flare or side effects that we may be battling.
This would help encourage me personally to have more strength and assurance that, even though this is a tough war that I am in, people are compassionate enough to make a huge difference in my life.
If you had to pick one, which area of your life has been most affected by PsA?
Like many individuals, the area of my life that has been affected the most by PsA is my social life. The reason behind this is that there are instances that occur on a regular basis where it is extremely difficult to leave the house due to the pain and exhaustion I feel.
It also does not help that I have been struggling to find a medication that works for me without having extreme side effects. Side effects that I have battled against with the medications I’ve tried include a seizure, weight gain, throat tightness, nausea, headaches, and vomiting.
Some days, I feel really down when I see other people my age going out and having the time of their lives while I’m resting at home. However, I have been telling myself that my condition makes me unable to live normally, and it's okay to forgive myself for that.
I am attempting to focus more on the positives of my life and planning things that I can do once I find a medication that works for me. This includes running a 5K, traveling to a new state or two, and trying to go out with friends more routinely.
However, I am also doing my best to be cautious about the number of times I go out due to the ongoing coronavirus pandemic (my immune system is weak, and I’m on medications that weaken it more). Even though these challenges can be difficult to manage and I need to choose myself over socializing, I do my best to find other ways to connect with my loved ones by utilizing messaging apps and social media.
Overall, I am striving to live my life as the average 24-year-old as best as I can.
How do you play an active role in your health? What advice do you have for someone just starting treatment about playing an active role in their health and treatment?
I play an active role in my health in several different ways. First, I routinely take vitamins each day, the most important being extra strength vitamin D and vitamin B12. Vitamin D aids with keeping my joints strong, and vitamin B12 is a way for me to get more energy throughout the day.
Additionally, I exercise seven days a week. I find that using an elliptical is easier on the knees, and I use light weights (5 pounds) to ensure that I’m not too hard on my wrists. I also participate in martial arts once a week with the hope of increasing it to twice a week within the next month or so.
I am really proud of myself for this, as my body has much more endurance than I originally thought. There are several studies that show the benefits for individuals with chronic pain to participate in martial arts. I currently am in taekwondo, I have a green belt, and I am testing for my high green belt in the summer.
Furthermore, I discovered how to advocate for myself and for my health. Even though I feel uncomfortable, I’ve learned to speak up when I identify new health issues that arise or if side effects are becoming too overwhelming. I am waiting on an official lupus diagnosis.
I also want to encourage others that it is okay to wear wrist and knee braces in public. I wrestle with feelings of shame when wearing mine, but I know that they reduce stiffness and discomfort. Finally, I have been working on but have not mastered managing my mental health. I struggle with severe anxiety, which causes constant pain and skin flare-ups.
I regularly go to therapy and try to find ways to calm myself down. A few things that I find help me relax are using jets in my bathtub on my major pain spots, journaling, playing noncompetitive video games such as animal crossing, practicing guitar, and regularly connecting with loved ones.
Overall, I feel that a newly diagnosed individual with PsA would really benefit from any or all of these tips.
The recognition of a painful journey
Brittany did not hold back, and her resilience is certainly showing. It is not said enough, but living with a chronic pain condition is hard. It deserves to be validated, recognized, and honored. After all, that's part of what resilience means – the recognition of a painful journey.
Thank you for your vulnerability, honesty, and commitment to raising awareness about psoriatic disease, Brittany. We couldn't do it without you. If you're inspired by Brittany's words, we encourage you to share your own and become involved here at Psoriatic-Arthritis.com – all at your own comfort level.
- Share your story. We want to hear about your perspective, challenges, wins, and observations.
- Check out our forums. Feel free to lurk, participate, or submit your own unique question.
- Learn about our patient leaders. These are real individuals behind the screen writing and sharing their own experiences living with PsA.
- Sign up for our newsletter. We send weekly emails with our latest content that runs the gamut of managing life with PsA.
- Give us a follow on Facebook, Instagram, or Twitter. A community of support is waiting for you.
We look forward to working alongside you and amplifying your voice in eliminating the unknown and painful stigmas of psoriatic arthritis. Remember, it just takes one voice to let someone know they are not alone.
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