The Side Effects of Chronic Illness

It's been 2 years and 7 months since I was officially diagnosed as AQP4+. And 3 years since I became partially blind. But NMOSD (as I always mention) did not come alone. It came with a multitude of layers. Physical disability, low immune system, spasms, restricted diet, diabetes myelitis, transverse myelitis, pins and needles, brain fog, lack of visual acuteness, an impact on mental health, and a lot more.

Over time I have realized that dealing with the stress of my chronic illness is just the tip of the iceberg. Just one of the many things that come with NMOSD.

Side effects of NMOSD

Another of the biggest side effects of chronic illness that I faced was accepting the new me, with all my limitations. The freedom of movement was gone for a toss. I couldn’t enjoy my life the way I used to. I could not eat or drink whatever I felt like, wherever I felt, and any time of the day. I had to learn to walk again and manage my life in one eye. From completely independent I was now dependent. Chronic fatigue made me procrastinate a lot.

I also realized that there was a lot of disparity in different sectors which never occurred to me when I was healthy.

Social impact

The first disparity that I faced was discrimination, and this was both personal and social. My so-called friends disappeared without a trace. The relationships around me became strenuous. My ex-in-law thought that I was a burden and cut me off and started to fuel my husband’s mind. People were ashamed to be around me (including my partner), which I found very strange.

People became patronizing. There was also a lot of mocking and stares because of my walk, and my squinted eyes. Some even told me that my illness was caused by bad karma. I was excluded from a majority of social things, that earlier I used to be a part of. Some said I was doing it for attention.

Healthcare disparities

Healthcare is very advanced in India, however for you to access it you need to have money or need to be part of the government sector. For a condition like NMOSD which is still new, it is a compromising state. There is a lack of information and the doctors will gaslight your symptoms and make you feel stupid.

Some hospitals are just money-churning institutes where unnecessary tests will be conducted, your illness will be over-hyped. But if you have good contacts you might get lucky. In my case, my paternal uncle is a surgeon and even with all the contacts he has, it took a good 5 months before the right line of treatment actually started.

The sad truth is if you are chronically ill, disabled, and you don’t have the right channel - you might be in for a ride. Also, no company is ready to provide health insurance because of the illness. If they are willing to do so, the insurance company will tell you that you can pay the premium yet there is no assurance that your medical bill will reimbursed.

Lack of inclusive work

When I became a little better, I started hunting and looking for a job. Another eye-opener, the job sector is not friendly and open to people with special needs. The minute you mention some kind of illness or disability, you won’t get a call back no matter how qualified you are for the job.

Most of the time it’s accessibility issues. The other thing is the healthcare policy for special people with disabilities and chronic illnesses. Why would they hire and give employment to someone unwell or disabled, when they can get twice the amount of the same job done with a fit person? And if by some miracle you get the job, there can still be social exclusion and prejudice against you.

Financial constraints

Any amount of sickness will take a toll on your finances. There are bills to be paid and mouths to be fed. When there is a disability and chronic illness like NMOSD, it is another level. Regular checkups with blood tests, MRIs scan costs, an assistive device. All these need money. Limitations for jobs and lack of funding. You have to cut costs on so many things. If you have a child no matter how aware they are, there are needs that have to be met as a parent and as someone with a chronic illness.

Education technology and transport

I was in my later term of Master of Psychology when I got unwell. After a break, I wanted to continue with my studies, but the lack of facilities made it tough. We don’t have enough trained teachers. What hit me most was I had to be in pace with the normal/ healthy students. Which was next to impossible.

I was told to drop off which I eventually did. I was asked to attend special schools. This also included navigation issues.

There are all kinds of navigational challenges that I have faced along with many others with NMOSD. Not all transport and areas are friendly for people with special needs. There is a major lack of technology in the educational and navigation area; here I speak from an average middle-class individual's perspective that has limitations in purchasing technologically advanced equipment.

Mental health and emotional well-being

I have chronic illness and I have had mental health issues from a very young age. Medications have side effects and then you have to deal with all the discrimination and disparity. Also you hear, oh you are just overreacting, the outside world and technology isn’t that bad it's your imagination.

No, it's not. It’s a harsh reality that I and many like me are going through. It makes it worse no matter how much self-care we do or try to see the funny side. The anxiety, fear, and other mental health issues might go away for a while but then they come back like a boomerang.

And in midst of all this with our small support system, we get up every day and put on a brave face, and try to normalize things - because we are warriors.