Rekha (name changed on request), 24 and a medical student has been living with dysautonomia since childhood and was also diagnosed with Sjogren’s Disease at the age of 21. She shares the challenges she has faced and how she advocates for herself with doctors, friends and colleagues as she navigates the complexities of her condition.
I am a 24-year-old female living in India and diagnosed with Sjogren's Disease and Dysautonomia. I am living with dysautonomia since childhood. I love anthropology, psychology and history. Growing up I wanted to work for child welfare.
See link below to learn more about Dysautonomia and Sjogren's Disease
How did it all start? Your early symptoms
I had lightheadedness, increased heartbeats (tachycardia), blurring of vision, sweating, and brain fog whenever I stood or did mild to moderate activities. I experienced these symptoms during school, college and later on. I never had a “normal” experience be it while shopping, visiting a bank, temple or going out to eat or traveling, attending parties or any events. I never played during childhood. It was hard participating in extracurricular activities in school.
How did you get a diagnosis? Was that journey difficult? When and how were you told about the diagnosis?
My parents took me to many physicians, pediatricians but no one diagnosed me. When I first learned about the nervous system in 7th Grade Biology, I had a suspicion that my Autonomic Nervous System (ANS) was dysregulated. I was severely cold intolerant, I constantly had gastrointestinal and urinary symptoms. Despite good diet, healthy family and school atmosphere my symptoms were persistent. All the basic investigations used to be normal. I have always shared with every doctor I consulted that I have symptoms on standing but no one evaluated me further or referred me. Most of them never believed how it was impacting my life. I stopped visiting doctors and tried to adapt to my abilities. I always craved salt and hydrated myself adequately. I never stressed myself with studies or anything. I did whatever I could.
I consulted a neurologist during college days, and he said all of my symptoms pointed to dysautonomia but said that I have to learn to live with it. Then at the age of 21, I started developing other symptoms like GERD, weight loss, hair loss, muscle pains, urinary symptoms, difficulty swallowing (dysphagia), recurrent oral ulcers, dry mouth, frequent allergies, darkening of skin, purpuric rashes, and menstrual problems.
I got diagnosed with Sjogren’s Disease. But the main issue which was significantly impacting my everyday life was my orthostatic hypotension. As a medical student I had to stand for longer periods in labs and postings. Most of my symptoms were dismissed because I was a medico, and my doctors said it is common to think we have diseases as we study a lot. But there were no other reasons for my symptoms, so I got myself tested for ANA and ANCA and went back to the doctor and got diagnosed with Sjogren’s disease. When I mentioned my dysautonomia symptoms to my rheumatologist they dismissed my symptoms saying it’s all in my head, that I am making up my symptoms and exaggerating my symptoms. I changed doctors but I did not get the help I needed. That experience combined with all my previous experiences affected me in a way that I didn’t consult any one for over 2 years. Recently I took up the courage to consult as I have to move forward in my life. I got diagnosed with dysautonomia, but I had to insist that they evaluate me. They did the Tilt table, Quantitative sudomotor axon reflex test (QSART), nerve conduction study (NCS)
Are the two conditions Sjogren's and Dysautonomia related?
My primary condition is Sjogren’s. Though I was diagnosed with dysautonomia my doctors did not conclude whether it is due to Sjogren’s or isolated.
What medications are you currently on?
I'm currently on HCQ 200mg OD. Previously I was on short course steroids and other non-steroid agents. I take vitamin D as prescribed for deficiency. I stopped pilocarpine as it is not showing any result.
I was prescribed fludrocortisone for dysautonomia.
Have you tried complementary medicine or therapies? If yes, did it help?
No, I haven't tried any.
What kind of specialists and professionals (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
I consult Rheumatologist, Gastroenterologist, Pulmonologist, ENT, Ophthalmologist, Neurologist as and when I have respective symptoms of each specialty. ENT and Pulmonologist during my allergy seasons. Opthal yearly once.
Yes, I have symptoms. I consulted a gynecologist based on some of my symptoms who suggested that I consult a urologist. I have yet to schedule this consultation. It's tiring to keep up with appointments.
I have not consulted a physiotherapist for any exercises.
Do you have a family history of this condition? Is it an inherited disorder? Was genetic testing done?
I don't have any family history, but my mother has dysautonomia symptoms similar to me. But she has not gone through an evaluation.
What changes have you made to your lifestyle because of this condition? How has your youth been different from others?
I limit going out. I adequately hydrate, take more salt, take balanced diet and sleep adequately. Being unable to do basic things on my own has made me feel incapable at times. Everywhere I go I have to sit. I struggle to finish chores which need waiting in queue like buying groceries, shopping etc. Whenever I don't get a seat in the bus and feel dizzy, I have to sit down or get off the bus. No one can see this disability and offer a seat. It is like fighting an invisible battle. Everyone in school was understanding. But it was difficult in college. I never went on any college trips since I didn’t have anyone to help me. Every time I hung out with friends, I used to feel lightheaded and couldn’t engage with them much. I never travelled alone like people of my age. My parents or friends accompany me in journeys.
How do you navigate study and work? What kind of accommodations, if any did your teachers/ employer need to provide?
Work was hard. I moved out from the hostel to home. Home food and constant care from parents helped me significantly while I was interning. No one will cut you any sort of slack for having such illness. You are lucky if you don’t receive insensitive comments from co students, seniors, residents and professors. It will be hard especially if you are female like anywhere in the world. No special health leaves will be granted. It was difficult getting usual leaves too.
Where did you feel supported? Did you feel you were being gaslighted?
The only people who supported me were my parents, sister and couple of friends. Rest everyone be it colleagues or relatives gaslighted me when I tried to share especially when I lost weight few relatives said to my face that I intentionally lost weight hence I developed the health issues. But it didn’t affect me much as they were always insecure about their own bodies. I'm grateful for times when I got help and understanding.
Has it been difficult emotionally to cope with your condition? Did you see a counselor to help cope with the emotional distress?
It was difficult since childhood but more during the initial couple of years in college. Dysphagia is impacting my nutrition, and I am struggling to manage it. Whenever I have muscle and joint pains and can’t do my work, I feel upset. Occasionally I feel sad about how my life has changed. But I made up my mind since childhood to adapt according to my body it didn’t affect me seriously at the time of diagnosis. It was more emotionally and mentally challenging to get the diagnosis and adequate treatment. Gender bias is very much prevalent even now in health care like every field. Your symptoms won’t be taken seriously or even considered if you are an adolescent or a young female. Especially if your symptoms are only fatigue, giddiness etc. I haven't taken any counseling yet.
Impact on life choices, on family dynamics, social choices
Growing up I never wanted to marry and have kids since it was difficult for me to do basic things, and I understood I won't be able to take more responsibilities. I always wanted to be a single woman. It's hard moving forward in my career as it comes with so much stress which impacts my health even more. I don't attend social gatherings as it is challenging and also that I don't feel comfortable socializing. I wanted to choose Public Health or General Medicine as my career, but my health isn’t supporting me to choose them so I’m thinking of alternative options.
What does a typical day look like?
I get presyncope (the feeling of going to faint) every time I stand. I sit back or lay down if it's possible and then I get back to work which typically includes standing, walking, taking stairs. I tend to forget things and can't execute my work properly and have to work over-time. I took a break from my career and am staying at home. As I am not working now, I don't have frequent symptoms.
How does your diet change and lifestyle change impact your social engagements?
Diet and lifestyle didn’t influence my illness much. Initially when I developed GERD avoiding triggering foods helped a bit. Mild aerobic exercises improved my mood and energy levels. Since childhood I avoided outside food. Whenever I went out with friends, they wouldn’t understand me not eating.
What is the hardest part of living with the condition? What were some of the challenges you faced and what is your advice to patients who face similar challenges?
Maintaining work life balance is the hardest part. My advice would be - find the right doctor who listens and addresses your symptoms. Trusting your doctor is important as diseases like these are chronic and it takes time for symptoms to be managed. Everybody's prognosis will be different. Follow regular consultations and tests as advised. Take medications as prescribed. Avoiding triggers, understanding one's own limitations and adapting is crucial. Maintaining healthy lifestyle is mandatory. Everyone should take care of all aspects of health as mental and emotional health beyond physical health also plays a role in development and prognosis in such diseases. If managing work becomes hard one should consider changing career if possible and shouldn't feel bad about it. Do what makes your life better and happy.
Joining Sjogren's India support group boosted my confidence. Various patient experiences are helpful in understanding disease and managing symptoms. It is reassuring learning other's stories. The founder Kirtida ma'am is a great patient advocate and guide.
What is your advice to patients and parents of young patients who face similar challenges?
Parents should understand their children. It is a difficult journey. Reassurance and care is what they need. There will be financial challenges too. Together as a family one should work things out. Consider therapy when needed. It’s okay to feel a little lost or sad. And one shouldn't lose hope or get discouraged, especially younger patients. We got diagnosed earlier than previous generations. We are being given early treatment. We can work on ourselves with all the knowledge we are equipped with. One might have doubts about pregnancy etc , discussing with people in support group might help. It will be difficult, but we should do everything we can to lead a near normal life. Fatigue, joint pains, neuropathies, organ damage will impact life considerably. But if we have fewer manageable symptoms, it won't be that difficult, I guess.
Your wish as a patient advocate
I wish we could get disability benefits based on symptoms and quality of life effected. It is also difficult financially as we need medication for life. I wish health insurance companies provide coverage for treatment of autoimmune diseases.
