It’s difficult to encounter people who don’t understand invisible disability

Our family has found immense comfort and support within the rare disease community. While many of our health conditions are inherited, others, such as my chronic Lyme disease and long COVID-19, were acquired. All of them, though, can be classified as invisible disabilities, including hereditary angioedema (HAE).

Although my daughter Leah and I, who have HAE, occasionally experience visible swelling, most of the symptoms we endure are internal, manifesting as inflammation. Leah’s episodes can be particularly frightening, especially when they involve life-threatening laryngeal swelling.

Other rare, invisible conditions my family lives with include Ehlers-Danlos syndrome, autism, mast cell activation syndrome, Sjögren’s disease, myalgic encephalomyelitis (also known as chronic fatigue syndrome), and more. But one of the obstacles we face isn’t the conditions themselves, but the encounters with people who not only lack understanding, but sometimes go so far as to challenge the reality of our health struggles.

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One of the most common comments we hear is, “You don’t look sick.” It’s hard to tell whether people mean to compliment how I look despite my illness, or if they’re casting doubt on the seriousness of my condition. Unfortunately, it often feels like the latter.

Another frequent question I get when I use a mobility aid is, “What happened to you?” While this may seem more benign and easier to answer, we often don’t want to disclose our diagnoses or launch into a conversation about our rare disease and everything it involves. Frankly, it’s private information — and honestly, none of people’s business, even if the concern is genuine.

Then there are the judgmental, obnoxious, and sometimes downright cruel statements like, “She doesn’t need a wheelchair. She was walking fine yesterday. She’s faking it.” Whatever happened to “If you can’t say something nice, don’t say anything at all”?

Do people really think we’re trying to scam the medical system? The idea is almost laughable, given how hard we must fight just to get even doctors to acknowledge our pain. We’ve seen multiple specialists, endured countless painful tests, and paid significant out-of-pocket expenses.

Or do people think we’re lazy? That’s equally absurd, considering the challenges of obtaining specialty medications, medical devices, mobility aids, and the support required just to get through a single day. It would be so much easier — and less burdensome — to live as independently as we once did, if only we could.

Living with a rare disease is arduous for patients, families, friends, and caregivers. It can be isolating and difficult to bear. I am deeply grateful to live in a time when rare diseases are no longer hidden away, and both physical and emotional support are readily available. I cherish the virtual communities we can access online, and especially the knowledgeable voices we connect with here at Bionews, the parent company of this website. I’m proud to be part of a rare disease community that truly “gets it.” Thank you all for being there for each other, and for us.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.