I am Tegan, 33, a Bachelor of Social Work student, Administration Volunteer and casual child-minder. I live with chronic pain and have experienced oppression and stigma society and systems unknowingly place upon us. I have sciatica, 2 lower spinal disc herniation’s (diagnosed 2014) and ganglion cysts-wrist (2017); when inflamed hit nerves.
Chronic pain conditions are painful, embarrassing and constant. This affects work, transport options/duration, sleep, studies, daily tasks, exercise, diet, mental health, finances, social life, intimacy, dating and meeting people. They require different medications, ergonomic office equipment, exercises, movement adaptations, wound care and mobility support devices. Treatment and support interventions are not cheap and addressing conditions require time; impacting finances, work, uni and social schedules.
Due to financial and appointment availability I could only focus on certain specialists annually and attend bulk-billed appointments with long wait lists and access restrictions. I prioritised conditions then later incorporated exercises/medication together with specialist help once the conditions became better managed or diagnosed. I relinquished health in my 20s, due to Domestic Violence. Since escaping (2012) and starting University, I have been learning to look after myself and found a trusted, supportive doctor. Now, I am more open to ask for help to make tasks more flexible, but have faced negative outcomes and adversity.
I currently struggle with Hidradenitis Suppurativa (HS) the most which is an inflammatory skin condition where excruciating boils, skin lesions (flares) or bumps occur with friction, causing inflammation and infection of apocrine sweat glands or blocked hair follicles and has profound psychological effects. HS usually occurs with co-morbidities. PTSD, depression or anxiety increase when my conditions flare up. My HS started in 2009, looked like pimples, but felt and looked different, occurring in the groin initially then slowly spreading to my chest, legs, back, tummy and armpits. I did my own research during the last two years and found HS on Google. I joined Facebook groups and approached my doctor with my research, which when he saw it he agreed to the diagnosis. I recently started opening up more to family and close friends, they can be supportive, but lack understanding or how to offer help.
People queried why I don’t just live with it? I wish to find and treat the root cause if I’m able to and help foresee future condition susceptibility, associated with current diagnosis, then treat appropriately rather than trial and error. This enables autonomy and some control. When I have expressed experiences, struggles or pain, people have stated lose weight and you'll be better, you are young and have no idea of pain- wait until you’re my age, exercise more, it cannot be that bad or it is all in your head. Comments made by acquaintances/medical practitioners hurt emotionally and deny validating pain, understanding or acknowledging experiences.
I am anxious of meeting people, what dating will bring and new challenges to overcome. I feared losing friends due to myths this condition is contagious or am unclean, obese and unhygienic being the reason I have this condition, all untrue. I bathe/shower regularly and use antibacterial treatments, washes, moisturizers and wound care daily to keep away smell, lesions and infection. Being overweight and stressed does not help, but it is not the cause. It appears to be hereditary, possibly from both grandparents on my mother’s side with symptoms on their face and groin.
I feel I have to prove my conditions, manage and diagnose them to show myself and society I am doing everything to function to social expectations. Specialists are another barrier to what my treatment needs and if I meet requirements. Specialist outcomes are hit and miss. My current doctor has been a godsend, supporting my decisions fully and makes referrals occur. After a few small surgeries, I started getting recurring boils and pain again. I asked for a dermatologist referral. In March 2020 I was diagnosed as stage 1-2 (less severe) HS. Dermatologists were excited for an early stage patient as most are at 3rd stage (severe) and treatments are less effective. What treatment works for one is not always effective for another; there is no known cure, yet.
The boils and lumps on my body can sometimes be golf ball sized, clustered or spread out and remain under my skin for months, close to the surface or deep in the skin. They may erupt, or retract repeating this cycle weekly, monthly or yearly. Lumps entering the surface create holes in my skin and leak blood, pus, green or clear fluid nonstop. My lumps also bring with them pain and fevers; but it is not known as to why this occurs. Personally, shaving triggers boils and I cater to wounds with bandaging and loose/sleeveless clothing. As a larger chested woman wired bras support me, but restriction or wires cause or burst wounds. Some women living with HS deny undergarment use completely because of this issue. Non-wired bras create chaffing and are less supportive. On groin wounds I use pricey incontinence underwear or uncomfortable pads.
Antibiotics relieve my internal swellings and are usually taken for 3-6 months at a time. Stopping medication causes anxiety as I know the issues will reoccur in a matter of days, but I do not like medications because of the impact they have on my gut and so I need to buy probiotic supplements to manage this side-effect. I have found that treatments can worsen flares before getting better and take about 6-weeks before taking effect.
The management of my conditions and mental health are ongoing. I use bleach/herbal tea baths, potato poultices, antibacterial washes and natural deodorants. Healing takes several months or never which often requires medical intervention. My next dermatologist visit entails starting a new medication, Isotretinoin. I am hesitant but will try anything under medical supervision only. Hot water and heat packs relieve pain and bring healing cells to the surface, at times erupting flares, reducing swelling.
Once healed, my lumps usually reoccur and leave dark scarring, which impacts my mental health. Medication/Traditional/Western therapies control my chronic pain, sleep apnea, immune system and mental health. Side effects consist of sleepiness, cognitive processing impairment, weight gain, depression, nausea, dry skin, swelling, itching, extra sun sensitivity and sunburn risk. The time and cost associated with managing my conditions is frustrating and hard to cope with sometimes. Daily tasks and exercise creates friction or pressure and makes my chronic pain flare. Swimming is less painful, but with visible wounds I’m conscious others view my pool use negatively. Swimming also means I have to pay for it and travel which is another barrier for me.
My 8 year nursing career and related studies ended in 2014 due to chronic pain and inability to perform domestic or care tasks. I switched to Social Work in 2015 and access University support; requesting extra time for essays/exams, exercise during class and use a tablet computer for notetaking. I am on AusStudy and am becoming less embarrassed by using these networks as they benefit me. I’m always seeking coping/treatment tips/tricks with specialists, forums or family support.
My current jobs are voluntary or casual so I manage the few hours I do work and work around chronic pain with exercise, strapping and careful movement.
I am always working around hurdles or bringing awareness so others don't face similar restrictions. Living with chronic pain makes me feel self-conscious, vulnerable to judgement and shame. It takes daily courage and strength to conquer our goals. Social work has taught me about the importance of self-care. I am anxious about opening up so publicly, but am at a stage where I know I am not alone and that first voice can help increase awareness and understanding to empower and support the HS and chronic pain communities secretly suffering, be heard, find hope and treatment options. We need social and institutional awareness, advocacy, research, opportunity and compassion to strive, or we lose hope in ourselves and life.