Tell Us You Have PsA Without Telling Us You Have PsA: The Invisibility of Pain
The trend “Tell us without telling us,” or “tell me without telling me” allows people to make pointed statements that play with stereotypes, defining characteristics, and the opportunity to share inside jokes.
As unique as psoriatic arthritis can be, we asked our Facebook community, "Tell us you have PsA without telling us you have PsA" The responses were overwhelming and we've noticed some consistent themes, so much in fact that we're creating an article series to play on the great shared topics.
So, tell us
Many people think that if you don't look sick, you can't be sick. That's the purest definition of an invisible illness. However, hearing from other people with PsA who also struggle with the insecurity and isolation that comes with an invisible illness can help you feel less alone. Here is what a few of those with PsA had to say about that invisible pain...
"Pressure from my children's hugs is almost unbearable, but I can't let them know."
"Having to smile and act like you don’t hurt as much as you do"
"Smiling on the outside while crying on the inside"
"Life doesn't stop even though you sometimes can't open up a water bottle, sleep or struggle to walk."
Do you consider psoriatic arthritis to be an invisible illness?
What do our advocates have to say?
So, what else do those who live with PsA have to say about living and managing the pressures of an invisible illness? Look no further. Jaime shares her own experience combatting those side-eyes and mean looks. The invisible symptoms are impossible to ignore which is why Cynthia says that the advice of "just don't think about it" is not helpful. And what about facing the judgement of friends and loved ones? Elizabeth breaks down that topic too.
Do you think your family and friends understand your pain?
It can be hard managing an invisible illness
Life with psoriatic arthritis can be frustrating in many ways, including the fact that your physical pain isn't visible from the outside. There are a few steps you can take to turn doubters into believers as well as take care of your own mental health.
- Start with your doctor. If you have to convince your physician you have a real disease, you are seeing the wrong physician.
- Try talking to your co-workers and loved ones. Advocacy and awareness is a great jumping-off point to getting people to understand. You can even invite them to a doctor's appointment if you're comfortable!
- Practice self-care. Only you know what you're going through and you know that it's a lot. Find time to be kind to yourself. Finding validation within yourself is the most important./li>
- Continue to be open, honest, and transparent. You don't have to prove anything to anyone. At times, it can feel isolating but there is no one is walking in your shoes but you.
Connection in community
While all of this is a comical and light approach to what life with PsA can entail, we know there is so much more. How can we get loved ones to understand the impact of pain? Are we able to push through this or should we just rest? If we choose to rest, how do we push past the guilt? Let's not even start on the overwhelming treatment options and doctor relationships.
Here at Psoriatic-Arthritis.com, we're a community that offers a safe place for sharing, support, validation, and kindness. However, you feel comfortable getting involved, we're here for you.
What do you think is the most important in managing an invisible illness like PsA?
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?