It’s estimated that nearly 10 percent of the United States population has a disability or illness that goes unseen ― from chronic pain to mental health conditions. People’s struggles with these types of chronic illnesses often go unrecognized, simply because the conditions aren’t visible.
But some of them are speaking up: Five individuals, varying in age and illness, told HuffPost what it feels like to live with a condition others can’t see, and shared how they make it through each day.
Interviews have been edited for style and clarity.
JT Fitzgerald, 23
Rochester, New York
Invisible Illness:
Hodgkin lymphoma
When did you first learn of your illness?
I was diagnosed with stage 3 Hodgkin lymphoma in December 2016. I started feeling exhausted all the time, with strange headaches and swelling in my neck. Multiple doctors told me it was just a sinus infection. People would say I seemed fine until they felt the swelling, but I knew that it was something more.
Does the invisibility of your illness affect the way you’re treated?
During treatment, things stop being invisible and become visible. Everyone has that image of a cancer patient without hair, thin and pale. Once treatment ends and your hair and eyebrows start coming back, everyone around you acts like everything is normal again, but you live with a deep anxiety and distrust of your body.
Every seemingly minor ache or pain is a reminder of what you’ve been through, a potential spot to find another lump, a trigger to send you spiraling toward a panic attack. Some days are easier than others, where everything seems like it did before I was sick.
Going through treatment strengthened my core personal relationships, but sometimes I feel like even those people don’t understand what it’s like now that the obvious illness is over. I get the sense that many people see the physical signs that I’m getting better but don’t understand that sometimes I’m still in pain, and I’m almost always still anxious.
What’s been the hardest or most challenging part?
Besides going through treatment, the most challenging part has been learning to trust my body again. It’s so strange to feel this disconnect between your brain and your body, because your body betrayed you on a very fundamental level. Having cancer made me realize how little control I actually have over my body, and it’s hard to reconcile this new distrust on a day-to-day basis.
How have you managed to cope?
I made it through treatment with the support of my friends and family, and with music. I find now, after treatment, that playing music and releasing music by my friends gives me a tangible thing that I can feel in control of, an end result to work toward, in contrast to the open-ended question of whether or not the cancer will come back. I work every day on accepting and processing the trauma of what happened to me and the new reality I find myself in.
How do you practice self-care?
When I’m faced with serious panic or anxiety, I try to get through the immediate situation by using visualization and breathing techniques. I have anti-anxiety medication I can take if things get out of hand, but I try to practice enough self-care in general so that things don’t get that far. Seeing a therapist regularly has been a huge help for me.
What would you want people to know about having an invisible illness?
Just because someone seems okay on the outside doesn’t mean that they’re fine, and it doesn’t always help to tell someone that they’re strong for dealing with an issue they had no choice but to deal with. To everyone else living with problems that others can’t see: Your pain is real, what you deal with is real, and there are lots of other people who know what you’re going through even if you can’t see their illness, either.
“I get the sense that many people see the physical signs that I’m getting better but don’t understand that sometimes I’m still in pain, and I’m almost always still anxious.”
- JT Fitzgerald, 23
Erika Delgado, 25
San Francisco, California
Invisible Illnesses: Major depression, generalized anxiety disorder, social anxiety, avoidant personality disorder, polycystic ovary syndrome, hypothyroidism
When did you first learn of your illnesses?
I was diagnosed with depression and social anxiety when I was 18. Before then, I always knew that the way I was feeling was more than just teenage angst and that the amount I missed school was not normal.
Does the invisibility of your illnesses affect the way you’re treated?
I’ve given up attempting to act like everything’s okay, because that only ever made me worse. It wasn’t okay, I wasn’t okay, and I didn’t want to continue lying about it.
I’ve lost contact with a lot of friends because of being sick all the time. Some people didn’t like that I talked about it, some people thought I was too much, and it still really hurts, but the friends that stayed along are the ones that truly matter and care.
What’s been the hardest or most challenging part?
Learning that it is stronger to be honest about it, and to give yourself breaks. That it’s okay for me to let people down, because I can’t make everyone happy and do not have to.
How have you managed to cope?
l have a lot of goals and people I love. That’s why I am still alive, because I still care and I still dream. I can’t give up yet.
How do you practice self-care?
If I need to cry, I let myself fall to the floor and just belt. I cuddle my cat. I order Taco Bell. I let my body give up so it can have the energy to get up stronger.
What would you want people to know about having an invisible illness?
I disappear for a reason. I am not lazy. And every time I fail, I take it harder than anyone else. But let me rest, and I’ll come back and you’ll see my smile and my energy and forget that you hadn’t seen me in a month.
“I’ve given up attempting to act like everything’s okay, because that only ever made me worse.”
- Erika Delgado, 25
Jesse Gage, 28
Fort Worth, Texas
Invisible Illness: Attention deficit hyperactivity disorder (ADHD)
When did you first learn of your illness?
I wasn’t officially diagnosed until I was 25. In hindsight, I knew I had ADHD, and there were some teachers throughout my childhood who knew.
Does the invisibility of your illness affect the way you’re treated?
Sometimes it can feel like having an imaginary enemy. Other times, it can feel like a super power. When I was younger, I had a lot of jobs that were not right for me. Those were situations where I constantly felt like I had to work hard on my weaknesses instead of using my strengths. Now I’m a line cook, a session musician and I work in a record store. That suits me better.
What’s the hardest or most challenging part?
Accepting myself. With something like ADHD, you have the risk of being convinced that there are things about you that are wrong and need changed. It can turn into a heavy amount of shame. People accuse you of being lazy, and if you hear it enough, you believe them.
I look at my Civil War-era fretless banjo that I had to get and spend hours learning to play. I think about all the other instruments that I impulsively bought, too. Money is pretty hard for me to deal with. I can fixate and become obsessive.
How have you managed to cope?
I’m still trying to accept there are things I am not going to be good at. This is torture when you want to be good at everything. I can be super harsh on myself.
When your illness is at its worst, how do your practice self-care?
Having a stable support system has been crucial for me. Being able to talk things out with my wife has been super helpful. Going to therapy and learning how to be patient with myself and how to ask for help was one of the best impulses I’ve acted on.
“I constantly felt like I had to work hard on my weaknesses instead of using my strengths.”
- Jesse Gage, 28
Terrah Devigne, 45
San Antonio, Texas
Invisible Illnesses: Fibromyalgia, depression, anxiety, chronic fatigue, narcolepsy
When did you first learn of your illnesses?
I was officially diagnosed for my fibro in 2010. It made no sense to me that I’d get so wiped out and tired after running the smallest errands. I also started to notice pain in various points that are common to fibromyalgia patients. I’ve battled depression for many years, and it became increasingly worse during my time serving in the military. The same is true for my anxiety.
Does the invisibility of your illness affect the way you’re treated?
Sometimes, I become frustrated to the point of tears. I used to feel like I was forced to run a marathon with broken legs. When I’m feeling sad or anxious, then I have to become my own cheerleader.
Particularly as a single person, there’s no one in my life to pick up the extra “slack” when I’m not feeling energetic. So I dig deep, and I force myself to carry on. But sometimes, I’m able to hide away and care for myself, especially since I’m self-employed, [working] from home. In fact, at this point, I’m really not able to work outside the home.
What’s been the hardest or most challenging part?
The most challenging aspect is feeling like I should be more capable. Sometimes my mind is clear, but my body doesn’t cooperate. Or sometimes my body feels fine, but my head is too foggy or sluggish to operate as is required.
“My disabilities have taught me to have grace and patience with myself. I’m kinder to myself, and therefore, I’m a lot more empathetic toward others.”
- Terrah Devigne, 45
How have you managed to cope?
Coping with the conditions was especially hard when I didn’t own a car, and I was very poor. I had zero social life, and that was excruciating. Now that I own a car, it’s still frustrating, because I’ll make plans, and sometimes I have to cancel at the last minute because I’m experiencing symptoms.
My disabilities have taught me to have grace and patience with myself. I’m kinder to myself, and therefore, I’m a lot more empathetic toward others. I’ve also found that my self-worth has improved, because I’ve learned how to advocate for myself.
How do you practice self-care?
My number-one piece of advice is to listen to what your body is telling you! If you’re tired, then rest and don’t feel guilty about it. Even a little bit of rest can help you to get through the day. If you’re sad, then give in to it. Create positive coping strategies, even if it’s simply laying down and watching a funny movie/comedy special ― that’s what I like to do.
What would you want people to know about having an invisible illness?
It’s important to keep in mind that we as disabled individuals have conditions, but the conditions don’t have to define us. Having said that, it’s crucial to be kind, patient, loving and empathetic towards ourselves. Then we can demand others to treat us the same way.
We deserve to be treated with respect, love, kindness, and with dignity. Don’t feel guilty about using the handicapped parking, or any accommodations for the disabled. Our health conditions are none of anyone’s business, and we have the legal right to any and all disability accommodations.
Ansley Lee, 25
Seattle, Washington
Invisible Illness: Bipolar II
When did you first learn of your illness?
I was diagnosed with depression and generalized anxiety when I was 17, which is super common for folks dealing with bipolar. Most of us get misdiagnosed with depression early on, since that’s usually the time someone would seek professional help. I was formally diagnosed with bipolar II when I was 22. At that point, I had already been hospitalized once for a suicide attempt when I was 18. I was hospitalized again at 23, and my bipolar diagnosis was solidified again by the doctor there.
Does the invisibility of your illness affect the way you’re treated?
It’s not easy, especially dealing with a condition that brings a stigma. In my personal life, I’m pretty open about my diagnosis and everything that comes with it, but I am very private about it in my professional life. I mean, this was something that I could be legally fired for not too long ago.
It’s interesting working in a creative field. I feel like it’s pretty socially acceptable in my work environment to talk about being depressed or having depression, but the word “bipolar” brings on a completely different weight. Everyone has their own preconceived definition of what it is. Most people don’t even know there are two different classifications of bipolar that are very different.
It’s hard when I’m having a flare-up to try to keep it together and go about my daily life. There have been times I’ve had to take sick days from work because of a particularly bad episode. In those moments, I have to remind myself that I have a medical condition and I’m doing what I need for my own personal well-being, just like anyone else would do.
What’s been the hardest or most challenging part?
I’ve had friends tell me they know someone “who is totally bipolar,” like they can get mad at anything out of nowhere, without knowing my diagnosis. Moments like that really hit home the lack of understanding most people have about bipolar disorder. When the public’s understanding is presented that way, it really makes me uncomfortable with people knowing my diagnosis. I always worry that I’ll be defined by something that most people don’t even fully understand.
Another factor is that I live alone, so I am constantly working on knowing when to ask for help. It’s not something that comes naturally for me, and I end up feeling like a burden most of the time.
“I always worry that I’ll be defined by something that most people don’t even fully understand.”
- Ansley Lee, 25
How have you managed to cope?
My diagnosis has played a big part in my personal life and relationships with others. Dating has always been challenging, because I’m always worried about when to tell the person I’m seeing. I don’t want to say anything too early and freak them out, but I also feel weird skirting around the issue. I also keep a lot of things to myself. I have a hard time talking about my feelings with friends, especially when I’m in crisis.
I think really educating myself about bipolar II after my diagnosis helped a lot. It was confusing at first, because I only knew about bipolar I, which is the more common presentation of the disorder. Once I knew what bipolar II was, I totally saw the signs.
Also being open to others’ experiences helped a lot. When I was hospitalized in 2015, I had to go to a lot of group therapy. I hated it at first, but I eventually got over it, and hearing others’ firsthand experiences helped when I was tired of hearing a doctor’s opinion of what my experience was.
How do you practice self-care?
Last year, I was getting bad news after bad news and got into the habit of bath bombs while listening to Rihanna’s “Anti” in its entirety. I highly recommend it.
I think a big thing for me is trying to get ahead of things. I’ve always had a pretty good meter on where I am mentally and can usually see when things are going downhill. I’ll suck it up and let my friends know what’s going on. They’re pretty good with not prying if I don’t want to talk about it.
What would you want people to know about having an invisible illness?
I would love if people didn’t just assume they know what bipolar is because they’ve seen an episode of “Homeland.” I’m more than willing to have a conversation about having bipolar, more so than correcting. It’s not my job to change anyone’s mind, but I just wish there were more conversations with me rather than at me, about me.
Related
Before You Go
