One Step After Another: My Story of Living with a Rare Health Condition

Myelin Oligodendrocyte Glycoprotein Anti-Body Disease. This is probably the first time you have ever come across these non-sensical string of words. However, this is what my existence pretty much revolves around. I had my first attack of this rare neurological condition nearly six years ago. The diagnosis however came a little later, after a few months, which is not uncommon within the rare diseases community. Many people go years without even receiving a proper diagnosis. The conditions are so rare that even doctors and scientists are unaware of them.

I am writing this post on the occasion of Rare Disease Day, which is observed on the last day of February every year. This year the day falls on 28th February. The purpose of observing the day is to commemorate all those who live with a rare disease; those who provide care, including doctors, healthcare professionals, mental healthcare providers, family members and friends; and all others who are involved in the healthcare and well-being of persons with rare diseases, including researchers, scientists and non-profit organizations working with patients and healthcare professionals. This is also an opportunity to highlight the work that goes into finding treatments and cures for these diseases, the lack of appropriate resources, and non-availability of funds. My hope of writing this post is to create some more awareness of living with a rare health condition by walking you through my own journey briefly.

Trigger Warning: Contains details about how my health condition presented and progressed. You can skip the next paragraph if you feel unable to read it.

One fateful day in January, 2017, I started experiencing a dull ache in both of my legs. Within a week, it escalated to an extent that I lost sensation in my entire lower body and could not walk or even stand. It was agonizing to go from a big law internship to a hospital bed in a matter of a few days. It took an emergency care visit, a range of tests, and multiple scans, before I was hooked to an IV line with a strong and high dosage of medication. I went from never having spent a day in a hospital to spending nearly ten days in one. Sensation returned to my legs over the next few days. I took baby steps once again and stumbled probably more times than a baby learning to walk does. I would keep chanting the mantra “one step after another” in my head. My subsequent attack was so quick that I lost eyesight in one of my eyes over the span of a couple of days. This is when I realized that my condition was there to stay. From there onwards, it was a whirlwind. Before I would grasp what was happening, something would crop up. In a following relapse I experienced symptoms in my upper body. I could not even hold a mug without dropping most of its contents as my hands trembled and shook. I pretty much developed a routine at that point: running to the hospital, staying there for a couple of weeks as doctors pumped in life-saving drugs into my body, undergoing physical therapy, and sinking a little further into depression. It was the last attack that left me completely blind and in deep depression.

I strongly believe that when you hit rock-bottom, the only way is the way up. Following my last major attack, my parents realized that this was no way to function as we had all sunk into a state of depression. This is when we finally decided to get help of a Cognitive Behavioral Therapist. I slowly picked up pieces of my life as I spent the next year and a half working with my therapist. I made drastic lifestyle changes and recovered from depression, anxiety and insomnia. This gave me the strength to return to law school, having taken a gap year. Things started to settle down and even looked up. I picked up speed from there and have pretty much been unstoppable ever since. I successfully became a lawyer and even came to UC Berkeley for my Master in Laws (LL.M.).

While I haven’t experienced any relapses in the last four years, I continue to be on immuno-suppressants for maintenance. The medication has severe side-effects and leaves me enervated, nauseous, susceptible to colds and flus, and in pain frequently. Over time, I have gain a significant amount of body weight, lost bone and muscle strength, gained an insatiable appetite (which has stabilized largely now), amongst a myriad of other side-effects. It has been a journey with ups and downs, however I am grateful that most of my physical symptoms are under control. While I am still completely blind and there is no cure for my condition, I have decided that I am going to live and do things I did not have courage for earlier. One thing I have realized is that regardless of what happens, life continues. You have the choice to either give up or take time to rejuvenate and go back stronger

Finally, I have a few takeaways and advice for anyone who has any form of a health condition:

1. Be kind and generous: Health conditions not only leave you feeling winded but also tend to put immense pressure on family and friends. Show yourself some kindness and compassion, and extend the same courtesy towards those who support you. It is never easy to see someone suffer. So, do not underestimate what people close to you are going through. When everything seems uncertain, you will be the pillars of support for one another.

2. Be aware of what is happening with your body: we often forget to look after our body, it is important to be cognizant of what is happening physically, mentally and emotionally in our body. Many conditions are preventable and can be treated early on. In this day and age, it is not uncommon to have some or other health conditions. Just take care and get medical help promptly when needed.

3. Prioritize your mental health: A lot of health conditions are caused due to poor mental health. Mental breakdowns have a strange way of presenting as physical conditions. Do approach mental health care professionals if you feel unable to cope. There is no shame in this.

Three things to do to show that you care:

1. Empathize and do not sympathize: There is a world of difference between the two and how they make one feel. Empathy stems from a place of understanding. It is like stepping into someone’s shoes and trying to feel what they might be feeling. On the other hand, sympathy is feeling pity. It can often feel condescending and patronizing. Example: Instead of making some pitiful comments, help them do a chore or run an errand for them; something as simple as picking up groceries or driving them to an appointment.

2. Do not ask intrusive questions: one wonderful thing about being born in the 21st century is access to internet. While you might want to learn more about someone’s condition, they might not be at a place to answer all your questions. This might be due to trauma, lack of information or even exhaustion from repeating the same story over and over. There is also a huge possibility that a person might just be uncomfortable discussing their condition and wants privacy. People who feel comfortable sharing with you might open up in due course.

3. Do not make assumptions: it is easy to make assumptions and all of us tend to do it. However, try to steer away from making assumptions about an individual. Do not presume that they can or cannot do something due to their condition. Also, do not come to conclusions without having all the information.

The “Did You Know?” section is brought to you by the CILP Program Assistants team covering various topics on social justice issues. This week’s author is Srianusha Thotakura.