My Life as a photographer with multiple chronic illnesses

I'm a chronic pain warrior

I've always been in pain. That may seem like a bit of an exaggeration, but in my memory I can not think back to a time that I did not have some kind of pain in some part of my body. The warrior part I'm still trying to embrace, but I'm getting there.

Every day I wake up and spend a significant amount of time stretching my body, slowly reorienting myself, and taking my time going from being horizontal to vertical. If I don't, I risk falling or worse: passing out. POTS (Postural Orthostatic Tachycardia Syndrome) is a autonomic disorder that affects between one and three million people in the United States, according to Dysautonomia International. My body has a hard time regulating my blood pressure, heart rate, and when I stand up, the blood in my body tends to pool in my lower extremities, which can cause dizziness, lightheadedness, confusion, tachycardia, heart palpitations, and fainting.

Not all of the stiffness in my body comes from the muscle tension inflicted by EDS. I also have Psoriatic Arthritis, a chronic inflammatory disease affecting my joints, tendons, and ligaments. Most harshly affected by the arthritis are my sacroiliac joints, causing a secondary diagnosis of Sacroiliitis.

I made an appointment with a new primary care physician, who pointed me in the direction of renowned rheumatologist Stephen Soloway. I finally felt like someone was listening to me instead of telling me to lose weight and take mental health medications! Within a few minutes in his presence, Dr. Soloway diagnosed me in a similar style to that of Gregory House, analyzing my pre-appointment health survey, looking at my body, and rattled off the list of treatments I would need to start.

TAKING MY LIFE BACK

A little over a year ago I started receiving treatments for my arthritis in the form of IV infusions of a biologic medication that works to weaken my immune system. It slows the deterioration of my joints, as well as reduces the systemic inflammation that causes my lungs, gastric system, eyes, and other parts of my body to suffer.

Days after the first treatment, I noticed a reduction in inflammation in my joints, and a clearing of the brain fog that the arthritis had caused me for years. I felt like I could focus on something other than the all-consuming question of whether or not I would ever feel better or if I would have to resort to filing for disability. I could have my life back. I could work, I could be a mom, and I could accelerate my career in ways I never thought possible.

I am a year into my treatment for PsA, and I am learning more and more about my limitations every day. One of the modifications I've had to make is bringing my work in-studio and not so much outdoors. One of the still mysterious parts of my illness is that I am seemingly allergic to the sun. I get what is called Polymorphic Light Eruption, which causes a horrible rash to appear when I am exposed to UV light, and occurs within a few minutes of direct sunlight contact with my skin. Some relief is brought by sunscreen, but I still either have to cover my skin, stay in the shade, or hope that my sun exposure remains limited.

I recently opened my own studio, approximately a year ahead of my original schedule, due to the need to keep myself indoors. I'm focusing more on 6m+ portraits including cake smash, milk bath, sibling sessions, as well as mini session events that allow me to provide a unique variety of portrait experiences for families, children, and professionals. Staying indoors helps keep my temperature regulated which is crucial to avoiding nasty flare-ups of my diseases, which seem to be triggered by heat, stress, and sunlight exposure.

I am by no means a medical professional, but these are some tips I've learned along the way.

But what if you flare-up when you're scheduled for a session or event?

There is no telling when a flare can happen, but when they do, it can be excruciating to do anything. I am of the "push through, don't let them see you sweat" mentality, although I'm sure that isn't always the best advice. As with any medical condition that could preclude one from doing their job, there are backups in place in case I can not make it to a crucial event (like a wedding, bar or bat miz, surprise engagement, etc). I have associate photographers that I can rely on to photograph in the case that I couldn't make it, however I have not yet had to enact that particular parachute, thank goodness.

When it comes to family, infant, boudoir, or other in-studio sessions, most clients are flexible and understanding. I have had to reschedule a couple of sessions here and there as I figure out my limitations and establish boundaries surrounding self-care and not overextending myself. I've also hired on an office manager/on-staff associate photographer who has been integral to keeping my inquiries, follow-ups, scheduling, and other tasks on point so I can focus more on the photography side of my business.

My ultimately fulfilling life

I searched for answers for over half of my life while battling chronic fatigue, brain fog, physical disabilities, and multiple learning disabilities. So much of my time was consumed with depression for thinking I would never have a happy, fulfilling life. Since getting the answers and starting treatments, I've lost over 50 pounds, reclaimed my house from the depression pit it had become, built my business from the ground up, and finally am a fully independent full-time photographer working for myself and no one else.

I live with my husband and (whip smart) toddler in a modest house, in a warm and welcoming neighborhood. I have a fully functional photography studio just a few minutes down the road from me. I have a thriving business that allows me to support my family and along with my husband's career, we're comfortable. It took finally getting my diagnosis and starting treatment to turn my life around. I knew I needed to be able to chase around an energetic child, and the byproduct of that was taking my part-time side business full-time and leaving the shackles of low-wage employers behind.

Despite the pain, I am happy.