What are invisible illnesses?
An invisible illness is a chronic health problem that doesn’t have any obvious outward signs to tip strangers off to the fact that this person is sick. For example, you might be able to spot a cancer patient by the tell-tale bald head or headscarf that they are sporting. A person who is paraplegic and in a wheelchair is an easy spot because of their steel wheels. A diabetic with an insulin pump or someone with a feeding tube or oxygen tank can be seen as “unwell” at a single glance by the general public (for better or worse).
But some one with an invisible illness may look completely healthy to others. An incomplete list of invisible illnesses include: chronic migraine, chronic fatigue syndrome, Lyme disease (and all the trimmings), mast cell disorders, occipital neuralgia, gastroparesis/IBS/IBD, fibromyalgia, Minere’s disease and vestibular disorders, deafness and hard-of-hearing, thyroid disorders, as well as a whole slew of issues with the autonomic nervous system. If this list looks familiar to you, then you or someone close to you probably has an invisible illness. If this list looks like a big jumble of medical jargon, then never fear, you don’t have to be a doctor or scientist to keep up with this blog; I’ll mostly be talking in layman’s terms that everyone can understand.
What is it like to live with one?
If you’ve ever had a super embarrassing moment in front of others, you probably know what it’s like to want to disappear into thin air and never be seen again (for me, an “embarrassing moment” includes my entire middle school career). But what if you had the opposite problem? What if instead of wanting to melt away into oblivion, you wanted to be seen by others but couldn’t be?
This is how a lot of people living with Invisible Illness feel. You may wonder, why would you want people to know that you’re sick? Wouldn’t it be less awkward or uncomfortable for everyone just assume that the sick person lives a normal life? The answer to that questions is both “yes” and “no.” For me, it’s a balancing act; I am split between wanting others to acknowledge my situation (note: this is not the same as seeking sympathy) and wanting to just “be normal” so others don’t perceive me as weak, attention-seeking, or high-maintenance.
An example: Jane
To make this easier to understand, I will tell you a little story about a girl named Jane:
Jane has a chronic illness. She has a condition called POTS that causes her to be very dizzy and get disoriented and faint easily, especially when she is standing up and walking around. Her condition causes extreme fatigue, the kind of tiredness that isn’t cured by an afternoon nap or a hot cup of coffee, so she is very tired most of the time. Her condition also causes “brain fog,” which makes it very hard for her to recall words when speaking and remember appointments, commitments she has made, and basic information like her own phone number (POTS causes many symptoms not listed here, but that is another post for another time.)
These symptoms cause daily tasks such as writing a paper for school or getting groceries to be very difficult for Jane, but POTS doesn’t cause any outward signs that can be seen by others to indicate that Jane has anything wrong with her (some people with POTS do use a wheelchair, but many do not.) The only people who know about Jane’s condition are her best friend, her family, and her doctors.
Everyday examples of why Jane wishes her illness was more “visible” to others:
- Teachers may think that Jane is unmotivated because she is often late to class and takes longer to finish an assignment
- Friends may think Jane is flaky because she has to cancel plans at the last minute
- Strangers may think she is just lazy because she uses the electric scooter to get around at the store
- Extended family members don’t understand how she can participate in family activities some days, but not other days
- Employers think Jane isn’t giving enough effort, even though Jane has to put in 3 times as much work as her co-workers, just to get the same outcome
- A date might think that Jane is too picky, because she doesn’t want to get dinner at a certain restaurant that requires her to climb a flight of stairs
- Making small talk is very uncomfortable for Jane, because others assume she has a traditional job or is attending school like “normal people”
- The disability community/the medical community may be wary of Jane and not fully believe that she is actually that sick
On the other hand…examples of why Jane is sometimes thankful that her illness is “invisible” to others:
- People don’t make a big scene to assist Jane and make her feel abnormal
- Acquaintances and strangers don’t ask probing questions about Jane’s health condition, since they can’t tell that she has one in the first place
- Jane looks more approachable to potential dates/employers/friends because she appears healthy and happy to outside observer
- Nobody gives Jane unwelcome sympathy or unsolicited health advice
Ok, I get Invisible Illness 101: Now what?
First of all, I want to personally thank you for reading my first post. Whether you are someone personally suffering through a chronic illness, or you are a caregiver to someone who’s ill, or whether you are just a friend, a relative, an employer, a teacher, or a neighbor to someone who’s life has been marked with illness, I hope this blog is a blessing to you and helps you in some small way.
Second, I want to address the “now what?” question.
If you’re someone with an illness: now you can share this or any other post with people in your world who haven’t had the opportunity to understand your situation fully. I highly recommend being painfully and completely honest with any safe people in your life, telling them how you feel and how they can help you navigate your situation. You are your own greatest advocate, but you don’t have to do this alone; there are so many resources that we often don’t know about or are too ashamed to utilize for one reason or another. My recommendation: tap into those resources (family, friends, churches, government organizations, non-profits) and watch the opportunities pour out.
If you’re a supporter of someone with an illness: give that person a hug and a yummy treat, they probably need it. Seek to understand them and ask how you can help make their day. And please help connect them with other resources in their life that they may not yet see– It takes a village to raise a child, but it takes about 20 villages to support someone with a chronic illness!
Thanks a lot,
Em the Silver Spoonie