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5 Things I Wish People Understood About Rare Disease

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One of the most common thoughts people have about those with invisible illnesses is, “But you don’t look sick!” My brand of invisible illness and rare disease – hyper IGE syndrome – is something few people know about and understand. There five things I want others to know about people with invisible illnesses and rare diseases.

1. I might never get used to this – it’s physically, mentally, emotionally, financially and spiritually draining.  

I can no longer count nor keep track of the number of times I have been hospitalized and have gotten sick. I tell myself that getting sick is nothing new – I always get sick and it will always happen, no matter how careful I try to be. Because you think you’re OK, you try to build a life for yourself – make plans, save for the future, invest in a healthy lifestyle, only to be discouraged again when you contract an illness and all the plans dissipate. You never get used to the disappointments. You never get used to having your savings depleted and finding another way to pay for the medical expenses. You never get used to being tired and unable to do the things you wish you could do. But you get used to picking up the pieces again and again, and every time you rebuild, you learn to build a better foundation for your capacity to be resilient and to endure the next coming hardship. You harness strengths you never knew existed in you. And only then do you realize that if the illness does not kill you, it makes you stronger. Even if it is terminal, the battle is not lost – you can surrender with a peaceful mind, knowing you did your best.

2. I might question my faith and my mortality, and that’s normal.

There are times in which our illnesses can cause us to question our faith and existence. There was a dark moment in my life when I questioned my own faith and thought, to hell with it, I’ll deal with this on my own. I try to make sense out of my sordid state – through religion, through spirituality, through psychology, through statistics, through medical knowledge – and the only meaning I’ve been able to extract out of questioning my own beliefs is that maybe God does not exist just for me. I am just a random speck in the universe, and I am no more important or special than the person beside me. People must respect my beliefs. They may not agree with how I have interpreted my own existence, faith and spirituality, but keep in mind that it is a product of my own subjective experience, and not yours.

Despite this depressive existential crisis, I was able to slowly build my own conception of faith and spirituality – one that is depressingly realistic, but also optimistically delusional so as to allay my fears of the uncertainty of my faith and certainty of death. I was able to make peace with this personal religion of mine and have sought a compromise: that everything happens for a reason, and that reason can only be answered by you – by writing and directing your own life story despite the misfortunes and misadventures that occur along the way.

3. I have dreams and ambitions, but I need to be creative.

Just because someone has a chronic illness or disability does not necessarily mean they are incapacitated. I remember when I was struck with complicated pneumonia again. This was during the time I was finishing my thesis for my MBA degree in graduate school while also working as a full-time psychology teacher. My doctor told me that I should resign. She explained to me that I will always get sick because it’s the nature of my illness, and that the only way to prevent myself from getting sick is to resign and get a home-based job. Now, I am happy I did not listen to her advice. That’s the thing about being a stubborn patient – when the odds are against me, I push back. I fight back. I push the envelope further, testing how much deeper I can go into the ocean of uncertainty. I know it’s selfish to fight for your dreams and ambitions. But I also know that it is more devastating to the psyche to limit an individual’s potential to succeed. Individuals with chronic and lifelong illness such as myself will always have disappointments, but despite Plan A not working out, there is always a Plan B. If Plan B does not work out, there is always Plan C. I guess the point I am trying to make is that having a disability does not always mean someone is disabled for life. And even though it will take us longer than others, even though the path will have many u-turns and detours, we will eventually get there and realize our potential.

4. Patient education and empowerment go a long way.

Because rare disease affects so few of us, medication and treatment is hard to come by. It can feel like nobody understands what you’re going through and that you have no one to talk to. But the internet and social media are saviors because they opened a window of opportunity for people with rare diseases to learn and become experts on their own illnesses and to connect around the world with patients and families like themselves. The realization that you are not alone can bring relief. And because you are all going through similar journeys, it provides the impetus for collective action in raising awareness and connecting and helping other patients and families. Patients and families must educate themselves about these illnesses that they deal with on a daily basis. Become an expert on your own diseases. Be mindful and kind to your own body. Nourish your spirit and find ways to cope. I don’t believe in resigning to your fate. In our quest towards learning how to live with a rare disease, we must also learn how pay it forward and to teach and show others who are having a difficult time. I hope that you will never get too tired to persevere, to persist and to live.

5. Sometimes it’s not about finding a cure – it’s about quality of life.

Education goes a long way for patients, doctors and families working towards providing quality of life and bettering the patients’ welfare and opportunities for growth. I am lucky enough to have a mother who has an intuition for investigating things that are out of the ordinary and the persistence to find answers for my condition. I was also lucky enough to have a pediatrician who was able to correctly diagnose my condition. I am privileged to have met doctors who have access to the right information and medical knowledge to learn more about my illness. I am also privileged to have the necessary resources, not only in the form of finances, but also access to education and healthcare, which are immensely helpful.

But access to these resources should not be a privilege – it should be a right. I believe that every person, no matter what demographic they come from and no matter what kind of illness they have, has a right to access to drugs, affordable healthcare and treatment and compassionate care. Preparation and prevention is key. Being able to know the natural progression of the rare disease should enable the patient and family members to prepare and provide quality of life in the years to come. Having a rare disease is not a blessing and it is not a curse. It’s not blessing because getting sick and having your life on the line is not OK. It’s not a curse because, given the right mindset and the right opportunities, it’s not always as bad as it initially seems. So it’s more of an adventure with ups and downs, hills and valleys, meandering roads and oceans to cross. The individual afflicted with a rare disease becomes very innovative, creative and resourceful in circumventing their limitations. Over time, you learn how to turn a sad or bitter situation into a happy and hopeful one. The trick is learning how to enable the disabled mind and body, how to embrace limitations and work with it and how to harness what’s usable, what’s workable and what can be built and improved upon. The body is just a vessel and an instrument towards fulfilling what the mind, heart and soul want to achieve. I guess I can say I am a living testament of a patient with a rare disease who has never given up on life and am surrounded by people who have never given up on me. And for that, I am immensely grateful and happy to be alive.

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Thinkstock photo via Archv.

Originally published: April 14, 2017
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