Note: To be clear I am not saying that invisible illness is more difficult than visible illness. I am not comparing or ranking struggles, just pointing out differences so we can better understand each other better. Each brings its own specific problems, and both are incredibly difficult to deal with.
It has been on my mind lately how different having a chronic illness can be for each person. Recently, I was hanging out with friends when one friend asked me how I had been feeling. I explained that I was better, but not great (my go-to response because what else do you say). Then, someone I considered a friend said, “Is there anything you don’t have?”
I was taken aback- why would you say something like that?! Well, his explanation really got me thinking. He has a chronic skin condition that has had some pretty bad flares. He explained that he hates when people pity him and he prefers to crack jokes instead. I honestly didn’t know what to do with that response. He gets pitied so often he thought an insensitive joke would be better? I rarely get pity and that hasn’t been my experience at all. I just could not relate.
So what is so different in our experience? How can we relate so little to each other? Visibility.
I tend to be in casts, braces, on crutches, or in a wheelchair more often than the average person. At these times my illness becomes visible. The majority of people of us with POTS usually deal with the struggles of an invisible illness. Invisible illness is when someone has a chronic illness, but you can’t tell just from glancing at them. Occasionally, we are visibly sick because of blatant POTS symptoms, PIC lines, mobility devices, or feeding tubes. However, the majority of the time I don’t look obviously sick. This is a blessing and a curse. I can pass for healthy and avoid constant glances and invasive questions which obviously can be nice, but here are some of the terrible parts as well:
1. Being Told It Is All In Your Head
I was told for years that my symptoms are all in my head. It is harder for doctor’s to diagnose problems you can’t see. I’ve been told by doctors that I am hypochondriac, that I have a low pain tolerance, that I have Munchausen’s, that I’m overreacting, that I’m anxious, depressed, and anorexic. The worst part? After long enough my family, friends, and even I started to believe them. After hundreds of tests it isn’t hard to believe that maybe you’re just crazy.
Emotional stress isn’t the only danger of having no outward symptoms. I nearly died because no one believed my pain when I had a blood clot in my chest. I was told I had low pain tolerance, was a drug addict, and just had a “stomach bug.” I am constantly having to be my own advocate to ignorant health professionals who don’t believe me and it is thoroughly exhausting.
2. Diagnosis Can Take Longer
When you only have symptoms and not obvious signs of illness getting diagnosed can be more difficult. With a broken bone they can take an X-ray and tell exactly what is wrong. When you have generalized symptoms that sometimes only be seen in one situation (i.e. Tilt Table Tests) it can be nearly impossible to diagnose and doctors jump to the easy solution when they don’t know the answer- dump you with the excuse that it is a Psychology issue.
3. Difficult For Friends and Family To Understand
Friends and family don’t understand why you can’t do the things you used to because we look the exact same. It is more difficult to understand why your teenager suddenly can’t help with chores when they look the exact same. Friends don’t understand why you are suddenly cancelling on them when you don’t look sick.
4. Judgement From Strangers
When strangers see people with an invisible illness in a wheelchair or using handicap bathrooms, parking, etc. they jump to judgement. I get rude comments, and other’s with invisible illnesses regularly get rude notes. I get the comment “but you don’t look sick” and am dismissed and chastised. I nearly never get sympathy. If you need more convincing, these notes are really common to receive on our cars for those of us with invisible illness:
Could you really be anymore ignorant and insensitive?
5. Judgement From Those With Visible Illnesses
The strange things about it is that there are a ton of us with an invisible illness, but we are misunderstood even by others with chronic illnesses. This week someone called attention to a post on a Facebook group called Disabled Dating that read “If you don’t look like you have a disability you will be booted from the group.” So many disabilities aren’t immediately obvious! How do you even say something like that?
This is a great website for invisible illnesses.
Visible Illness Problems
I have much more experience with my illness being invisible, but my experience when my illness is visible has been completely different. People with visible illnesses do tend to get more sympathy, but there are also terrible downsides I would never wish on anyone. People ask invasive questions about their condition, and they get a ridiculous amount of pity. We could all use some empathy, but pity takes it a step too far. People with visible illnesses are talked down to in an incredibly dehumanizing way. People are constantly saying things like “you’re so brave” or “you poor thing.” People also expect some visible illnesses to be short-term and constantly ask when people will feel better, be getting out of a cast, stop needing a port, or stop needing a feeding tube. Constantly explaining your problems are chronic is also frustrating.
Our experiences with visible vs. invisible illness are certainly different in many ways. One thing in common is people have no idea how to talk to chronically ill people. We should at least learn to relate to and talk to each other.
Do you have a visible illness? Would you like to share your experience on how the challenges differ and are the same? Submit a guest blog post! Email me
Honestly, it might be good for those of us dealing with ongoing, long term, chronic conditions to focus on the similarities we share. Life is hard whether others can see your struggle or not and we could all benefit by encouraging each other to keep on keeping on.
What I struggle with having multiple conditions and using a cane or wheelchair a good bit of the time is that the use of mobility assistance DOES NOT make my illness visible. Those around me do not understand POTS or my muscle disease just because I’m using a wheelchair. What’s wrong with me is still invisible. I’ve had people tell me I look too healthy to be in the chair or use the motorized cart at stores or whatever. I do not have a neon sign floating above my head listing the multiple chronic conditions I have. So I/we have invisible illnesses with some visible signs. I agree wholeheartedly with your comments about invasive questions and pity over the visible part, but can also relate to the frustrations of the disbelief and cluelessness of those who are considered to have invisible illness.
If one cares enough and learns to read a person, you can learn when an invisible illness is flaring and the individual is suffering more.
What I think needs to happen both within the chronic illness community and with those who interact with us is to show more compassion. Let’s not focus on pointing out weaknesses or limitations. Let’s not doubt whether a person is suffering. Let’s love them and show them kindness!
That’s a really good point. Mobility devices don’t necessarily make an illness visible. In fact sometimes they make stranger’s bad behavior worse because they can’t see why you’re using the mobility device.
I concur! We do need to focus on compassion for each other. More compassion for everyone! 🙂