Do You Hide Behind Your Psoriatic Arthritis Diagnosis?
Psoriatic arthritis symptoms and the challenges associated are widely misunderstood. Truth is, if we don’t talk about our psoriatic arthritis, people will never understand what we go through. They will never understand the grave impact it has on our daily lives. There is nothing normal about this disease. No two people with psoriatic arthritis even present with the very same exact symptoms. If we don’t speak about it, how can we expect to gain understanding from those involved in our daily lives? How will anyone understand what we go through and the impact it has on our body and mental health.
We Must Educate Our Social Circles!
Upon my initial diagnosis, I searched endlessly online for support and others that understood. Oh sure, I found them. I found them hiding behind closed social media groups on Facebook and other social sites afraid to publicly discuss their horrific symptoms and emotions dealing with this beast. I am guilty as well. It certainly helps to connect with those fellow psoriatic warriors, however, I realized there is no wonder PsA is so widely misunderstood.
Psoriatic social media groups are filled with posts about being in the worst flare of their life. They post pictures of their symptoms and ask for advice from veteran PsA warriors in hopes of support and encouragement, while at the same time, their social media pages portray a completely different life. There you see posts and photos of an amazing day at the beach or outing spent with the kids at the park or zoo. What it does not reflect is the aftermath of these outings. It is a clear misrepresentation of our everyday life living with psoriatic disease.
What We Don’t Share
- The number of days it takes us to recover from the outing
- The endless piles of laundry, dishes left undone because we don’t have the energy left to take care of it
- The ice packs, heating pad we had to break out because we stood too long and our joints are swollen
- The eight-hour nap we took because we pushed ourselves past our threshold of exertion
- The creams we ran for to sooth our dry, cracked open skin lesions from plaque, guttate or pustular psoriasis
- The pain patches and pain medications to stop our backs from feeling like they are going to break
- The braces for our ankles, elbows, knees and wrists because they are painful and unstable
And, we don’t share the tears we shed because we feel so misunderstood!
How can we expect people to understand if we are not openly speaking about it on a regular basis?
Let’s face it, we are a minority. We must use our voices, knowledge and resources loudly to educate about psoriatic disease.
Do these conversations sound all too familiar?
You: “I was just diagnosed with psoriatic arthritis.”Response: “Yeah, I know what you mean. I have this really, painful thumb after a round of golf.”
You: “I just can’t make it to your party. I am in a really bad flare up and need to rest.”Response: “I totally understand, my work week was hectic too and I am completely exhausted!”
You: “I get really nervous about being around a lot of people for fear of getting sick.”Response: “Maybe you should start taking some immune boosting supplements to help build up your immune system.”
How do we Fix it?
How can we ever expect our social circles to understand our struggles if we shut down and remain silent. Remaining silent is not educating. Openly discussing your symptoms and helping people understand your struggles can be therapeutic for your emotional well being and may help to relieve your fear of what others may think of you.
I read story after story where PsA suffers discuss how their family thinks they are lazy or unmotivated. And others state…
“They just think I am a hypochondriac.”
The fact is, what one can’t see, they cannot understand. We must find a way to help them better understand.
Here are some helpful tips to help YOU help your FAMILY and SOCIAL CIRCLES
- Invite your family member or friend to come along with you to a rheumatology visit
- Hearing it straight from the doc is a game changer on their understanding of how serious psoriatic disease really is
- Share articles of symptoms and challenges associated with psoriatic disease and ask them to read them with you
- A good resource is the National Psoriasis Foundation
- Invite them to join social media pages and other sites that discuss the challenges of living with psoriatic disease
- There is power and strength in numbers
- Openly discuss with them HOW you are feeling and WHY you are not feeling well.
- Knowledge facilitates understanding and understanding facilitates compassion
- Don’t refrain from sharing your journey openly on social media
- No one has a perfect life
- Everyone has challenges
- It will go along way in raising awareness and understanding of PsA
Your Voice Has Power
We cannot keep quiet! We must continue to raise awareness and spread knowledge of this incurable beast. Sharing our journey is not a ploy for sympathy. Quite simply, it is to help those that are not familiar with the complexity of the disease to gain a better understanding. We need our social circles to have a better understanding of how PsA impacts our daily lives and the challenges we face to perform everyday routine tasks. We don’t have to walk this journey alone.
I would really like to hear how you spread awareness of psoriatic disease with those around you. Please share your thoughts, tips and feelings with us in the comments below. You never know who you may inspire or help with your words.
Wishing you a pain free day!