How I Navigate Life as a 30-Year-Old With 22 Diseases

All photos courtesy of Karishma Khemlani

It felt like the harmless game “How many fingers do I hold up?” Had gone terribly wrong.

When I was 12, I began to lose sight in my right eye. Soon I could barely see my own hand as I closed my functional eye and tried to “train” my deteriorating eye. The doctors promptly provided the clinical term for it: Toxoplasmosis, an infection caused by a parasite in cat feces, undercooked meat, and contaminated water that affects the eyesight of people with compromised immune systems and causes lung infections and encephalitis.

Losing my sight at such a young age felt like life as I knew it was coming to an end. But what I then thought was a terrible twilight now appears like a soft golden glow.

When I turned fifteen I was diagnosed systemic lupus erythematosus, an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in affected organs. My doctor suggested that I give me a chemotherapy drug that also suppresses the immune system. But my father vehemently refused the treatment because one of the side effects was infertility.

The next year my mother, sister and I left India and fled to the Philippines because my father tried to kill me. He had abused me physically, verbally, emotionally, and sexually until I was 16. It started with him calling me a “burden” and wishing me death because my home expenses increased because of my worsening illnesses.

All my life he had convinced me that if I tried to tell them what he’d done, no one would believe me. But when I finally broke down and confided in my psychiatrist, followed by my immediate family, he realized I could seek legal counsel and have him locked up, so he thought it wiser to protect yourself by taking me out of the picture .

We lived in Manila with my aunt for about 13 years from 2006 to 2019. There my condition continued to deteriorate and I was diagnosed with fibromyalgia, which caused widespread musculoskeletal pain accompanied by fatigue, excessive sleep, and problems with mood and memory.

This, along with a variety of 22 lupus-associated diseases, some of which include vasculitis (which blocks the flow of oxygen to the brain and can lead to a stroke); Optic neuritis (which damages the optic nerve and causes temporary vision loss); Adenomyosis and endometriosis (where tissues that normally line the inside of your uterus begin to grow inside and outside your uterus, respectively); axonal, segmental, lateral, and peripheral neuropathy (which causes multiple nerve strand dysfunction, resulting in muscle weakness and pain in the affected area); rheumatoid arthritis (where the immune system mistakenly attacks healthy cells and causes inflammation in the joints); and lumbar scoliosis (which causes a sideways curve in the lower part of the spine).

We took a four day trip to India for my sister’s wedding in 2011 and finally moved to Mumbai in 2019 to be closer to her and her daughter. By then, I had lost 53 percent of my bone density thanks to the powerful steroids I was given, and I was mostly bedridden.

Living with my illnesses and the aftermath of my previous abuse also made me vulnerable to mental health problems. I had to consult quite a number of doctors for my treatments, which was daunting to say the least. In India, doctors don’t like to work with other doctors. And even if they agree to collaborate, the patient is expected to relay the messages between them.

Fortunately, I now have a doctor who is at the center of all of my clinical interactions. I also never realized how life changing it is to find the right psychiatrist because my counselors have always blamed me for harming myself in the past.

My current psychiatrist understands that when everything starts to slide around me, it’s the only thing I can control that I hurt myself. We talk every few weeks and he gently asks if I have harmed myself or have thoughts of suicide. And he never makes me feel ashamed to say “yes”. Instead, he will educate me on how to identify and deal with the triggers. And should I still injure myself afterwards, he and my doctor tell me how to clean the wound, depending on the severity, whether it has to be bandaged, breathe or always covered. So it’s nice not to have a judgment from your doctor.

I was also diagnosed with Dissociative Identity Disorder (DID) two and a half years ago. For the uninitiated, it’s right James McAvoy has in Splits (2016), although the portrayal of how it affects patients is quite demonizing.

DID is a severe mental process that creates a lack of connection in a person’s thoughts, memories, feelings, actions, or sense of identity. Patients often develop “altered” or multiple identities to deal with past experiences that are too violent, traumatic, or painful to align with their conscious selves. It’s a terrible experience because every time I have an episode I relive my previous abuse and need to be comforted and reassured until it is over. Personally, I can’t tell you how it is because I keep experiencing my childhood trauma; I only know secondhand how I look from the outside during an episode. Although the trauma I am reliving sometimes feels very real, sometimes it feels like watching a movie about someone else’s life and showing a completely blank exterior.

I have good and bad days – more bad than good – but the rising hospital bills have unfortunately been my most loyal companion so far. My previous jobs as a digital marketer and social media manager helped offset some of that expense, but it was highly stressful industries so I was forced to suspend my career when illnesses took over my life. I tried to get back into work when I was feeling better, but realized how difficult it is for people with invisible disabilities to find a job. I mostly had to rely on part-time projects or stand in for friends to make some money, as HR sometimes withdrew my offer letter after learning of my terms.

I like to think that I’m good at what I do because I spend quite a lot of time on social media analyzing audiences, picking up on trends, and collecting valuable case studies. But people don’t want to inconvenience themselves by working with someone like me because the liabilities of having me on the team outweigh the assets I can bring in. I have seizures, fainting, dissociative episodes, and panic attacks, but I never let them get in the way at work. And if I have a particularly bad relapse, I take a few weeks off – just like a healthy person requests a short vacation.

But employers don’t want to take the risk, so I started Fundraiser in 2019 with a goal of 1.5 crores (15 million rupees, approximately $ 202,000). Unfortunately, it is the same with friendships and relationships; Most people are intimidated by the amount of “baggage” they would sign up for.

I also find it amazing how uninformed people can be when dealing with chronic patients. Strangers on the Internet repeatedly question the authenticity of my illnesses. “How can a person have so many diseases?” “Are you sure that you are blind in one eye? Your eyesight looks pretty normal. ”“ You don’t look sick. ”

My answer now is simply, “You don’t look stupid, but here we are.”

I can handle their ignorance. But some particularly malicious people take it upon themselves to attack the veracity of my fundraiser, which has been authenticated by Milaap (the fundraising platform) and has received donations from around 2,500 people.

Two years ago, a couple of malicious people reported my fundraiser and blocked it for a week until I rechecked all of my records and reports. Someone once called the hospital I was in to check that I was indeed a patient there and when they couldn’t find me because they didn’t know my last name, they wrote long posts on social media calling me a liar. While there are some fake ones floating around, real patients are affected when campaigns and fundraisers are challenged. My whole life depends on the fundraiser; With this money I pay my rent, electricity bills, medical bills and medical fees. So if my access to these funds is blocked, I will not be able to take my medication and I will develop severe withdrawal symptoms that will postpone my progress by several months.

I am currently suffering from long covidwhich causes people to experience persistent, recurring, or new symptoms for a month or more after an infection. It completely derailed my treatment as my doctors have spent the past few months preparing me for the vaccine. I got my first dose a week ago and am still experiencing the after-effects. My arms and legs are swelling and initial scans show cellular inflammation so I need to recover from that now.

As we speak, I am putting together a fear box that contains valuable items and pictures of my favorite people along with notes they have written me over the years. Sometimes when you are surrounded by hungry sharks on a sinking ship, all you can do is watch the sun set over the horizon.

Follow Karishma Instagram.

source https://www.bisayanews.com/2021/08/17/how-i-navigate-life-as-a-30-year-old-with-22-diseases/