Patient Blogs | Psoriasis
Psoriasis: What I Wish People Knew
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Loneliness and lack of understanding can be as debilitating as palmoplantar psoriasis itself. For me, living with several chronic inflammatory diseases is oftentimes a solitary affair marked by frustrating limitations, bizarre self-care rituals, anxiety, and fear. Experiencing a flare can be especially isolating. Feelings of loneliness combined with a tendency to hide both physical and emotional symptoms can lead to withdrawal and avoidance. Paradoxically, it is at these times that my need for authentic connection is strongest.  

My body and soul crave connection as one way to heal and feel whole. For me, expressing feelings and needs about my health openly and honestly, while mildly excruciating for me, is paramount to self-nourishment and recovery (even if it risks disappointing others). Ever a work in progress, minimizing my pain, denying my feelings, and not heeding my internal warning systems is my own personal recipe for emotional disaster.

As I work to unlearn and modify these self-destructive behaviors and the conditioning behind them, I also learn to hold myself accountable for the negative feelings, tendencies, and reactions that prevent me from advocating for myself when I am not feeling well. Increased self-awareness and helping others become more aware of the effects of chronic disease are ways to set healthy boundaries and redefine what wellness means to me.   

There are many common misconceptions about psoriasis that can lead to feelings of diminishment. In addition to dealing with the disease itself, there is often the added layer of having to convey again and again that it is a genetic, systemic, non-contagious condition that can be painful, debilitating, and have psychosocial effects beyond the surface of the skin.

Impacts on Intimacy

Facing personal interactions when you have psoriasis can be embarrassing. For me, because my hands are affected when I am flaring, a simple handshake can be challenging and painful, and first meetings can be awkward. Sometimes, people understandably recoil from my handshake, but it’s something I’ve never really gotten used to.

On a more intimate level, simple acts of loving touch can also be difficult and strained when my palms are cracked and bleeding (and slathered with ointment). As humans, we show affection through touch, communicating our love with our hands when words are not enough. When my ability to connect with others and express love in this way (even just holding hands) is hampered, feelings of inadequacy can creep in, affecting my self-esteem and eroding my confidence.    

Whole-Body Involvement

Psoriasis occurs on both sides of my family, as well as my husband’s family, so there is no shortage of hereditary evidence in my case. It can affect our skin and joints, including vulnerable and particularly problematic areas like the scalp, fingernails, eyes, hands and feet, and genitals. Systemic inflammation is the hallmark of psoriatic disease, and it is associated with a host of other health problems, many of which have affected me and members of my family adversely -- even when our skin is clear. One recent example is my mother’s years-long battle with uveitis, a painful inflammatory condition that causes serious and distressing problems with the vision in both of her eyes. We learned early on in her diagnosis that it is closely associated with her psoriasis.

Psoriasis and Mental Health

Managing the emotions of psoriasis is as much a part of the disease state as the burning, itching, and damaging inflammation. Anxiety and depression can come with the territory, both as triggers of the disease and side effects of its impact on overall wellness and daily living. Research continues to point at the connection between psoriasis and stress and mental health.

My own journey, like many others, has been a cyclical one where stress, anxiety, and depression exacerbate underlying health problems, and coping with the underlying health problems compounds the stress, anxiety, and depression. Learning how to break the cycle has become a way of life for me.

 

 

Photo Credit: Josh Smith/ Ascent Xmedia / Stone via Getty Images

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