When People Say My Illness 'Can't Be That Bad'

It’s been two years from diagnosis and a lifetime of being misunderstood. When a diagnosis finally came, family and close friends were caring and compassionate enough. But that’s pretty understandable as it was the peak of my flare. I had a stroke, followed by a cyst that suddenly grew out of hand that required surgery and infections here and there right after. 

When remission came, things started to change. People expected me to get back to where I left off. I tried my best to share information about flares and remissions. I wanted people around me to understand that things will never be the same again. But not everyone seems to get it. 

Some would say my condition isn’t that bad. That perhaps I have enjoyed doing nothing, thus turning down every good career opportunity. Some would tell me I have gained weight from sleeping so often and again, for doing nothing. It hurts to be accused of these things. It hurts to be dismissed every time I try to explain. 

And we all know that the only people who have the power to hurt us are the ones we love. So yes, these people who actually pushed me to get my “normal” life back came from circle of loved ones, both family and friends. They would tell me that it’s all in my mind. That I wasn’t fighting hard enough. How hard do I have to fight? I wondered.

One person said I do not have cancer and that it is a blessing. Well, right. But I believe she meant I am not sick enough and not miserable enough. She would recommend me to friends who have businesses, and would ask me to submit resumes. But I never did. I know it’s not going to be fair to the business or me. I know I wouldn’t be able to keep up eight hours of work or eight hours of being awake straight. This time I know I have to stand up for myself and for what I believe is right and true.

Another incident was when I opened up to a friend that I had difficulty breathing thus am having disrupted sleep. The first thing she said was, “Maybe because you’ve gained weight?” I did. But I already went to the doctor and weight wasn’t the issue really. For people with mixed connective tissue disease (MCTD), lung issues are just around the corner. I didn’t want her to figure out what’s wrong with me; all I wanted was to share how I am now. After all, that’s how friends are right? Or have things changed? The list went on, hyperventilation, anxiety, lack of cardio exercise, etc. Again, I never wanted her to figure out what’s wrong with me. All I wanted was someone to talk to, a friend. I blog, I tweet, I post on other social media platforms, but at that moment I wanted to talk to a friend. But I felt dismissed. Like my concern wasn’t really a big deal. I felt like a drama queen, whining over nonsense.

Those experiences made me want to spread awareness more about MCTD and other autoimmune, chronic and invisible illnesses. I felt there is a need to let family and friends understand the emotional rollercoaster we go through due to the physical pain and fatigue we feel. For those of you who are being told that our sickness isn’t that bad, do not ever let them get into you. It’s OK to feel bad about what they say; we have no control over our feelings. But do not let it linger, use it as an inspiration. Be bold and spread awareness so the next generation of people with autoimmune, chronic and invisible illness will no longer have the same experience. There may be nothing we can do for ourselves right now, but there is something we can do for others.

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Lead photo by Thinkstock Images.