The 'Do's' and 'Don'ts' of Answering Questions About Your Friend's Rare Disease

So, you have a friend with a rare disease.

Maybe this illness is invisible and your friend looks like your average person, but physiological differences influence the way they walk, talk and sleep. Maybe the illness is fully evident by different physical characteristics, or presence of a wheelchair, crutches, intravenous wires or breathing tubes.  You may be a parent, sibling, friend, acquaintance, grandparent, teacher, or community leader. Perhaps your friend’s disorder is not rare at all, yet something still sets them aside from the “average” being.

If you know someone with a disorder that affects the way they get involved in their communities or appear to others, you may have received questions.

Is your friend OK? Does she need help?
Why is he walking so strangely? Why are his eyes lopsided like that?
Why is she panting so hard when all we did was walk up the stairs?

I have lipodystrophy, a disorder that makes me very, very underweight. Despite eating the equivalent of seven horses, two elephants, five hyenas, and a mongoose (which I have recently learned is not actually a species of goose), I will not gain weight due to my lack of fat cells…though I am still prone to bellyaches. Many people assume I am anorexic and become concerned, despite knowing nothing about me. My experience comes from living with a disorder that affects my appearance, and I must be prepared to answer inquiries when they come my way. Since my lipodystrophy is physically evident, I am especially prone to receive curious, or even judgmental stares. I do not know whether it is fortunate or unfortunate that I do not receive many questions myself—on one hand, I don’t like to deal with constant questions. On the other hand, I know my peers receive questions about me, or even gossip and investigate among themselves if they do not know my whole “situation.”

I’m sure you may know someone with a disorder similar to or the same as mine. You may have had to deal with people who are extremely curious, and perhaps even nosy. Even the most well-trained advocates may feel some discomfort when receiving inquiries, and this is because some interactions can be awkward and unsettling. The questions asked and the answers offered are sure to vary among individuals and their respective diseases. Based on my personal experience with a visible rare disorder, I wanted to offer some “do’s” and “don’ts” that may be helpful when answering difficult questions. These rules may not be directly applicable to everyone. However, no matter the difference in disease, these guidelines can certainly be adapted to respond to any prying enquirers.

When a friend, family member, teacher, coworker, or stranger asks you about your rare friend…

Don’t be ashamed.

Maybe you have never been asked this kind of question before, or you are not sure what to reply. It’s possible that you barely know me enough to speak on my behalf. The most important thing to remember is that you are allowed to answer questions. You are allowed, and expected, to support your friend who is “different.” Those with rare diseases and physical disabilities are people too, and want to be treated like anyone and everyone else. We too, want to be respected, and the last thing we want is pity. Rather, we want understanding, empathy and admiration. I will never know exactly how you respond to these questions unless you tell me, but I sincerely hope that when you get asked, “Is your friend OK?” that your heart doesn’t drop, you don’t think uh-oh and your face doesn’t flush red. The person asking will see this, and I need people to know that I am strong. So I rely on you, my non-rare friend, to stay strong for me. When you get asked a question, do not retreat, but stand up straight as you stand up for me.

Do ask about their inquiry.

This one may be controversial, so I’ll get it out of the way early. Sometimes people can ask questions that are borderline intrusive, like “Does she need help? Is she eating?” One thing I would be compelled to ask if I was not in this body, but yours, would be, “Why do you want to know?” This may seem like a silly waste of energy, a sure way to stir up drama—and maybe it is—but I think it is important to correct behavior if the motivation is not out of concern. It will not cause drama if asked properly, in the correct tone. Are they a psychologist who specializes in eating disorders and would like to extend their personal information if needed? Or do they just “want to know” because they are “curious?” There is a difference between concern and curiosity, and it is important to discriminate between the two. If they have a good reason to be asking—if they are sincerely worried and were to offer resources for help—genuinely thank them for their concern, for reaching out, then assure them I am A-OK. If they do not have a good answer, then there is no need to provide them with further information. It is not (necessarily) improper to ask questions, but I take issue if someone is doing so for their own benefit rather than mine.

Don’t brush it off.

Responding with “Don’t worry about it” when asked “Is she OK?” will not make people any less curious. In my experience, they might just go ask other people, spread gossip, or shoot worrying glances my way for the rest of the night. Again, you are allowed to answer questions, and give information when you think it’s appropriate. Please don’t back away or leave the questioner with more questions.

Do advocate.

You are allowed —and I really hope you do— to advocate and teach someone about lipodystrophy, or whatever condition your friend is facing. You are allowed to explain what my condition is, and you are allowed to point them towards resources to learn more. If you have a friend with a rare condition and are now realizing you know little to nothing about it, maybe it would be a good idea to do some research. If you have a strong relationship with your rare friend and feel comfortable doing so, you may be able to ask them (just remember to assess what kind of relationship you have with your friend, and realize that some may not want to discuss in-depth about their experiences).

Answering questions effectively does not only educate others about rare disease, but may also influence the way they think about others. You may say, “Dena has a medical condition called lipodystrophy, and does not have fat cells. She eats plenty, has a wonderful support system, and even writes a blog about her struggles with body image and her experiences living with lipodystrophy. I strongly suggest you check it out—it’s quite incredible!” Teaching someone about rare disease and disability will not only educate, but may also prove to someone that things are not always as they seem. Underweight people do not always have eating disorders, and overweight individuals are not always “lazy” people with poor eating habits.  Effective education can change the way others inquire about people’s lives. Regardless of what you say, remember my first piece of advice: don’t be ashamed; stand up for me. Paint me as a strong character, not someone who struggles with a life-altering illness who needs hugs, kisses and prayers to get by.

Please try and avoid telling me about it.

I know people ask questions. Personally, I don’t feel comfortable hearing that people are asking questions about my body, so please don’t tell me. I do not want to know you were approached, how you were asked, or what you replied. I know people stare and gossip (this is the unfortunate reality of people with visible disabilities). I do not want to be reminded every day that people think I am weak, mentally unwell and starving. On the several occasions I have been told that people asked about my state of health, it has done me more harm than good. So while you don’t need to tell me about it, please continue to respond effectively.

If you are asked a question about me, you become my representative, my voice. In that moment, you become the advocate. The fight against the stigma that many rare diseases carry is not yours or mine alone, but ours. Stand up for me and stand with me. Let’s do this together.